So it's the end of the year already (how did that happen?) and everywhere there are year end recaps and best and worst lists and so on and so on. So what's one more?
Our top ten (in my opinion) Not in any particular order (except for number 1):
10. Abby playing soccer in the spring. She played so much better this year and had more fun. She scored a lot of goals (not that anyone keeps score!)
9. Watching/listening to Eli playing by himself. He sings about what he's doing, he uses voices for the toys, he has sound effects, it's adorable.
8. Visiting my Dad's side of the family in Kansas City in June. I love when all the little cousins (our kids) get together to play, they are hilarious. I love seeing my Grandma. I love the excitement of a road trip and staying in a hotel. It just makes me wish we all lived closer together.
7. Getting the chickens. There, I admit it, my husband was right. I LOVE the chickens. They were adorable as chicks in a box in the corner of the kitchen. They are hilarious to watch in the backyard. I love when the neighborhood kids show up at my door in the summertime with a grasshopper in hand and want to feed it to the birds. I love getting fresh eggs.
6. Abby starting Kindergarten. She is so adorable with her little backpack on. I love hearing about what she's learning about and her new friends. I love to watch her learn to read and write and do math and learn about the world. I'm a little sad she is growing up, but I'm learning to embrace it.
5. The fall women's Bible Study at church. We read "Feminine Appeal" by Carolyn Mahaney. I got to know some other women at our church a little better. I only wish I could have made it to more of the actual discussion groups, but I loved the book. I hope we do more studies like this in the future.
4. This one is for the kids: Abby and Eli going to Disney World with my parents and my Dad's side. Boy do I wish we had been able to go with them, I really looked forward to it all year long. I know they had a great time because I've heard all about it. I'm happy whenever my kids are happy.
3. My third and final pregnancy. I know I complained a lot about being hot and uncomfortable and a lot of the pregnancy was bathed in worry, but I have always really loved having a little life growing inside of me. The anticipation and excitement of "what are we having?" "when will she be here?" "who will she look like?" Yes I'm huge by the end of my pregnancies, but I love having my big preggo belly and feeling and seeing the baby moving around. And I learned to trust God more so than ever before during this last pregnancy. My husband and I grew closer together, I learned to appreciate my family and the little things more. My extended family, my church family and my work family rallied around me and encouraged me.
2. The birth of Hannah Joy. I love giving birth. Is that weird? This one was particularly exciting, the doctor almost didn't make it! I have only experienced that unbelievable rush of love three times in my life as I held my newborn for the first time. I cannot explain it, but I will always remember the feeling.
1. Bringing Hannah home from the hospital for the second time! I am so thankful for the surgeons, cardiologists, intensivists and nurses that cared for Hannah during her surgery and hospitalization. I was thrilled to bring her home for her first Christmas. And that first Christmas with my whole little family was wonderful.
Happy New Year everyone! Here's to an exciting 2012!
Thursday, December 29, 2011
Welcome to the circus
Well we're back home and back to the chaotic life that I love. I'm sorry I haven't updated the blog, but we brought Hannah home last Monday (the 19th) and I hit the ground running. Where we left off after the last post:
The first few days after her care conference (my last post) Hannah was just hanging out not eating very well, she still had the NG in place and they were talking about sending her home with it since they felt I could manage it. She accidentally pulled it out on Saturday afternoon and suddenly starting eating fantastic! She really hates that thing in her nose I guess. So they sent us home Monday afternoon. It felt so great to walk out of the hospital with her after a month. It was snowing and I wonder if she wondered where on earth she was going.
That night we had a little family dinner with the grandparents to celebrate Hannah coming home and also Abby's belated sixth birthday. My mom baked a few cakes for me and I tried to make the princess in the dress cake but it is harder than I expected. It's okay because Abby still loved it and really, cake tastes great even if it's just in a big messy pile on your plate.
The next few days are somewhat of a blur, I remember laundry and unpacking and doctor's and dentist's appointments and Christmas shopping and preparations all while trying to remember how to be a mother of three again. Thank goodness for pizza delivery and my mother. Jeremiah is back to working five 8 hour day shifts so he is home in the evenings for dinner, I couldn't be more thrilled, it's so wonderful to sit down as a family for dinner together. And he's here for bedtime routines and everything!
Christmas was fantastic. I was really worried that Hannah might spend her first Christmas in the hospital and it really bothered me. I'm very sentimental and all I could think of was how that would ruin the magic of Christmas for my other two kids. I will have to post a whole thing on Christmas.
I decided to finally take Eli's pacifier away the day after Christmas. Did you know that the day after Christmas Santa comes back to the houses of all the 3 year old boys and girls who still have pacifiers and he takes them back to all the little baby elves at the North Pole, then he leaves the kid an extra present. Then the kid goes to bed and cries all night long for his pacifier, then he's fine the next day. I wish we'd done this a few years ago. Next up, potty training. Poor Eli, he's kind of the forgotten middle child right now.
As far as Hannah goes, she's still struggling with eating and weight gain. We are going to see the cardiologist again on Friday morning for a weight check. If she hasn't gained enough weight then we will end up back in the hospital for the weekend. Praying that doesn't happen, but I'm packing a bag before the appointment tomorrow morning. Hannah has been struggling with a little stuffy nose, but she is generally eating better than she did last week at this time. Also, she has started sucking her two fingers on her right hand, just like her big sister. Doh!
Happy New Year!
The first few days after her care conference (my last post) Hannah was just hanging out not eating very well, she still had the NG in place and they were talking about sending her home with it since they felt I could manage it. She accidentally pulled it out on Saturday afternoon and suddenly starting eating fantastic! She really hates that thing in her nose I guess. So they sent us home Monday afternoon. It felt so great to walk out of the hospital with her after a month. It was snowing and I wonder if she wondered where on earth she was going.
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| Our very loving and creative friend Anna made this welcome home sign for Hannah! I left it up for three days so all the world (or at least our cul-de-sac) could see our good news! |
That night we had a little family dinner with the grandparents to celebrate Hannah coming home and also Abby's belated sixth birthday. My mom baked a few cakes for me and I tried to make the princess in the dress cake but it is harder than I expected. It's okay because Abby still loved it and really, cake tastes great even if it's just in a big messy pile on your plate.
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| I didn't realize Barbie was so tall, you need a lot of cake to make a dress for this lady. |
The next few days are somewhat of a blur, I remember laundry and unpacking and doctor's and dentist's appointments and Christmas shopping and preparations all while trying to remember how to be a mother of three again. Thank goodness for pizza delivery and my mother. Jeremiah is back to working five 8 hour day shifts so he is home in the evenings for dinner, I couldn't be more thrilled, it's so wonderful to sit down as a family for dinner together. And he's here for bedtime routines and everything!
Christmas was fantastic. I was really worried that Hannah might spend her first Christmas in the hospital and it really bothered me. I'm very sentimental and all I could think of was how that would ruin the magic of Christmas for my other two kids. I will have to post a whole thing on Christmas.
I decided to finally take Eli's pacifier away the day after Christmas. Did you know that the day after Christmas Santa comes back to the houses of all the 3 year old boys and girls who still have pacifiers and he takes them back to all the little baby elves at the North Pole, then he leaves the kid an extra present. Then the kid goes to bed and cries all night long for his pacifier, then he's fine the next day. I wish we'd done this a few years ago. Next up, potty training. Poor Eli, he's kind of the forgotten middle child right now.
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| Eli's "bubbas" waiting on the front step for Santa to come pick them up. |
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| Eli is really starting to get into "boy" mode. Light saber and a sword. |
As far as Hannah goes, she's still struggling with eating and weight gain. We are going to see the cardiologist again on Friday morning for a weight check. If she hasn't gained enough weight then we will end up back in the hospital for the weekend. Praying that doesn't happen, but I'm packing a bag before the appointment tomorrow morning. Hannah has been struggling with a little stuffy nose, but she is generally eating better than she did last week at this time. Also, she has started sucking her two fingers on her right hand, just like her big sister. Doh!
Happy New Year!
Tuesday, December 13, 2011
Today was the care conference.
This morning all the docs had their care conference where they discussed Hannah, among other things. It seems that they are all in agreement that they do not want to take Hannah back into surgery! Phew! The concern was could they actually fix the tricuspid valve and if they got in there and found they couldn't then what would they do? They feel that she can be managed with medications and go home on them with follow up. She may still need surgery down the road someday (months? years? we're not sure) or she may never need surgery, I'm still praying for the Lord to heal her tricuspid valve.
The concern now is that she is not eating very well. Over the last four or five days Hannah has taken in less and less formula and has lost a little weight. She has had a swallow study to check her ability to eat (excellent!) and the speech therapist has been here for several feedings and tried different nipples. Hannah can't get the first ounce of her bottle down fast enough and then it's like she just stops and looks at me like, "done." Sometimes she gets really fussy and starts crying and I wonder if her tummy hurts. She will love me sharing this with everyone when she gets older, but Hannah has always been a gassy kid and it's even worse now! She is on a lot of constipating meds and I think that combined with her increased fussiness and her difficulty burping during feeds has made her a VERY gassy girl. During her feeds she seems to get uncomfortable and I'm thinking eating may start a ripple effect in her gut, then she gets fussy because of the pain and cries even more, it's a vicious cycle. I'm planning to look online to see if there is some little tummy massage moves I can do to try and help her.
This morning she got another NG (feeding) tube placed in her nose, so far she's doing okay with it. We try to feed her and then the nurse can give her the rest of the feed thru that. The hope is that she picks up her oral intake and can go home soon. There is a possibility that she may end up with a G-tube if she can't eat everything and start gaining weight. That's the little port button thing that goes through her abdominal wall right into her stomach. We just have to see what the next several days ahead bring us. I'm not sure how long the docs are willing to give her to see if she can improve her eating, but I'm really getting anxious to get home before Christmas. A few weeks ago I bought Hannah some Christmas jammies and I would like her to wear them at home on Christmas Eve.
She is sleeping happily at the moment, no small miracle since she has decided that sleeping during the day is for losers. She gets to distracted by everything and then gets overly tired and really fussy. Despite all that I can still get her to smile sometimes. My cousin and her family stopped in briefly on Sunday and Amy came back to meet Hannah for the first time and the baby started smiling at her! I look forward to the time when we are home and my super happy smiley baby is back. You think I'm posting a lot of pics now!
The concern now is that she is not eating very well. Over the last four or five days Hannah has taken in less and less formula and has lost a little weight. She has had a swallow study to check her ability to eat (excellent!) and the speech therapist has been here for several feedings and tried different nipples. Hannah can't get the first ounce of her bottle down fast enough and then it's like she just stops and looks at me like, "done." Sometimes she gets really fussy and starts crying and I wonder if her tummy hurts. She will love me sharing this with everyone when she gets older, but Hannah has always been a gassy kid and it's even worse now! She is on a lot of constipating meds and I think that combined with her increased fussiness and her difficulty burping during feeds has made her a VERY gassy girl. During her feeds she seems to get uncomfortable and I'm thinking eating may start a ripple effect in her gut, then she gets fussy because of the pain and cries even more, it's a vicious cycle. I'm planning to look online to see if there is some little tummy massage moves I can do to try and help her.
This morning she got another NG (feeding) tube placed in her nose, so far she's doing okay with it. We try to feed her and then the nurse can give her the rest of the feed thru that. The hope is that she picks up her oral intake and can go home soon. There is a possibility that she may end up with a G-tube if she can't eat everything and start gaining weight. That's the little port button thing that goes through her abdominal wall right into her stomach. We just have to see what the next several days ahead bring us. I'm not sure how long the docs are willing to give her to see if she can improve her eating, but I'm really getting anxious to get home before Christmas. A few weeks ago I bought Hannah some Christmas jammies and I would like her to wear them at home on Christmas Eve.
She is sleeping happily at the moment, no small miracle since she has decided that sleeping during the day is for losers. She gets to distracted by everything and then gets overly tired and really fussy. Despite all that I can still get her to smile sometimes. My cousin and her family stopped in briefly on Sunday and Amy came back to meet Hannah for the first time and the baby started smiling at her! I look forward to the time when we are home and my super happy smiley baby is back. You think I'm posting a lot of pics now!
Saturday, December 10, 2011
It's complicated
So today marks 25 days in the PICU, Jeremiah started a little tally on the white board in here. Talked to the cardiologist and surgeon this morning, like I do every morning and feel a lot more informed. Hannah had an ECHO on Thursday, the cardiologist that looked at it feels that her tricuspid valve is leaking a moderate amount. This isn't really new information, but their explaining it to me is. The thing with all the information and the various docs that are involved in Hannah's care is that it takes awhile for all the info they all throw at me to sink in, and I piece stuff together a little at a time. I believe that is a gift from God so that I'm not so overwhelmed at once.
I will be an expert in cardiology before this is all thru.
So pray that Hannah's leaky tricuspid valve fixes itself. Or at least that she can tolerate it and improve enough to go home. If she improves (eating better, weaning off oxygen) she can go home. If she continues to hover in this state where she is not eating all the time, needs oxygen, can't seem to get ahead of the complications than the surgeons might have to go back in and try to fix her valve. That's MIGHT. It's not on the books yet, we're just taking it a day at a time (like we have been) to see how Hannah does. If she needs surgery it may be soon, it may be in a few months or a few years, it all depends on Hannah. I'm just beginning to understand this now. It's kind of complicated, I know. I wish I had taped the surgeon's explanation this am and I could stream it up here, I wonder if he would mind coming back in and doing the whole thing for me again! There is a very nice diagram on the white board, I wonder how often he has to draw it for parents.
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| The tick marks are in the upper left hand corner, I know there are only 24, we add the new one at the end of the day. I don't know what 44 is, but isn't that a nice drawing of Hannah's heart? |
If you have questions feel free to send them my way, I will try to answer them. If you have a minute pray for the leaky tricuspid valve, I might have to nick name it.
Wednesday, December 7, 2011
But I don't wanna blog (whine, whine)
It's been over a week since my last post, sorry about that. I started out so good with frequent updates on Hannah, but the last few days I've just been putting this off like I used to put off writing papers in college. We've kind of slowed down in the exciting positive stuff happening. She had her chest tubes out last Thursday and has kept them out (so far), but not a lot of other progress has been made. If anything we haven't really moved forward or backward, but just kind of got stuck and now we're completely stalled.
Okay, so I also must admit that I'm feeling a little sorry for myself and that might be clouding my judgement, but not by much, I think the docs are frustrated too.
Before Hannah's chest tubes came out the doctors decided that she didn't have a chylothorax after all. It seems she had a leaky RA line that had slipped out of her right atrium and as they were infusing her lipids into her IV it was leaking out into her pleural space (that's in her chest) and then draining out the chest tubes, looking very much like chylos. Whoops. Funny huh? Yeah, not really. But I was glad to hear that she could eat regular breast milk again and didn't have to keep her chest tubes. So out they came and she started eating regular food again. Then over the weekend she got really fussy and fought all her feeds, stopping after only a few sucks. We were worried she might have developed reflux or an allergy or something, turns out she was in withdrawal, whoops again. Sunday night she got some methadone (yeah, like ex-heroin addicts in treatment programs are on, no stigma there) and started doing better. Long story short (to late) she's back to not eating very well and they have put her back on the fat free breastmilk/formula combo. She still has some fluid around both lungs, it may be chylos, maybe not, time will tell. She doesn't have reflux and the speech therapist that did a swallow study on her yesterday said she has one of the best swallows she's seen in awhile, aww thanks. She started vomiting after her feeds overnight so that's no good, not sure why. She is currently out on a field trip to interventional radiology getting a PICC line, that's a peripherally inserted central catheter, so she can get lipids and other fluids and have blood drawn without having to poke her so much.
I'm over it. Really, over it.
I wanna go home. Before Christmas.
I spent yesterday and this morning sulking but I know it could be worse, she doesn't have cancer, she won't need more open heart surgeries, at least I will get to take her home again someday. I'm just discouraged that this all seems to be taking so long and she seems to develop random complications that delay her going home. I'm ready to go as soon as she is, now to just get Hannah on board with that plan...
Okay, so I also must admit that I'm feeling a little sorry for myself and that might be clouding my judgement, but not by much, I think the docs are frustrated too.
Before Hannah's chest tubes came out the doctors decided that she didn't have a chylothorax after all. It seems she had a leaky RA line that had slipped out of her right atrium and as they were infusing her lipids into her IV it was leaking out into her pleural space (that's in her chest) and then draining out the chest tubes, looking very much like chylos. Whoops. Funny huh? Yeah, not really. But I was glad to hear that she could eat regular breast milk again and didn't have to keep her chest tubes. So out they came and she started eating regular food again. Then over the weekend she got really fussy and fought all her feeds, stopping after only a few sucks. We were worried she might have developed reflux or an allergy or something, turns out she was in withdrawal, whoops again. Sunday night she got some methadone (yeah, like ex-heroin addicts in treatment programs are on, no stigma there) and started doing better. Long story short (to late) she's back to not eating very well and they have put her back on the fat free breastmilk/formula combo. She still has some fluid around both lungs, it may be chylos, maybe not, time will tell. She doesn't have reflux and the speech therapist that did a swallow study on her yesterday said she has one of the best swallows she's seen in awhile, aww thanks. She started vomiting after her feeds overnight so that's no good, not sure why. She is currently out on a field trip to interventional radiology getting a PICC line, that's a peripherally inserted central catheter, so she can get lipids and other fluids and have blood drawn without having to poke her so much.
I'm over it. Really, over it.
I wanna go home. Before Christmas.
I spent yesterday and this morning sulking but I know it could be worse, she doesn't have cancer, she won't need more open heart surgeries, at least I will get to take her home again someday. I'm just discouraged that this all seems to be taking so long and she seems to develop random complications that delay her going home. I'm ready to go as soon as she is, now to just get Hannah on board with that plan...
Monday, November 28, 2011
The rest of the day on Saturday
So literally just minutes after I posted the last blog on Saturday Hannah decided to once again develop a complication. She developed a pneumothorax, that's a collapsed lung, on the left side after they removed her chest tube from there. It was partially collapsed and the ICU doc tried a few things to see if it would resolve on it's own with less intervention but they ended up putting in a different chest tube around 11 pm Saturday night. This one is inserted in between her ribs, which I understand is a little more painful than the one through her abdomen, so she is back to receiving IV pain meds, but at least she is comfortable with them.
The other nice thing is that they let her start taking fat free breast milk. There is a donor milk bank here at PSL and they have some milk available that has had all the fat removed, she loves it. She was not taking the Tolerex formula very well and was so unhappy ever time we tried to feed her so we switched her over and it's like night and day. Last night was the first time she had some, she guzzled down 2 1/2 ounces, burped and passed out, it was wonderful! The ICU doc was a little hesitant about the breast milk, but a few of the nurses really pushed for it and I'm so thankful they did. I have no qualms about donor milk, it's pasteurized and the moms that donate it have been strictly screened, I'm so thankful they have donated so she can have a delicious meal again. The calorie count is different with the fat removed, so right now they're trying to figure out how to fortify it to bring it back up to the level she needs. The bank won't use my milk, I'm guessing it would "potentially contaminate" their machinery, but that's fine with me, that means I may actually have some stored up when all this is over with!
Overnight her RA lines (the IV lines that went directly into the right atrium) started to leak so they pulled those out this morning. Her only access is a peripheral IV in her left foot that we're guarding with our lives. Her other various "connections" are her two chest tubes and her nasal cannula and her continuous pulse oximetry. That count is way down from when she started almost two weeks ago. So far her nurse Jenny holds the record for removing the most "stuff" from her, I gave her credit for the chest tube, JP drain, pacer wires and art line on Saturday. She is pretty happy to hold the rank of leader. See, it's not all stuffy seriousness around here.
Saturday night I had a mini break down but yesterday was better. Christa came down and spent some time with me in the morning, I am so thankful for her, she is the best friend a girl could have. Jeremiah and I had lunch in the hospital cafeteria, the food was good for a Sunday and then my mom and I took Abby to the Disney Store to pick out a princess dress to wear for their upcoming trip to Disney World. Jeremiah and I went out to grab dinner at a pizzeria close to the hospital. I didn't spend very much time here yesterday, but I really think I needed that escape. I have been staying by her bedside day and night for almost her whole adventure here and I was starting to go a little crazy. I'm even trying to figure out which night I can go spend at home this week. I don't want to leave her, but she's fairly stable and the nurses take such wonderful care of her that I feel like one night away should be okay.
More pics:
The other nice thing is that they let her start taking fat free breast milk. There is a donor milk bank here at PSL and they have some milk available that has had all the fat removed, she loves it. She was not taking the Tolerex formula very well and was so unhappy ever time we tried to feed her so we switched her over and it's like night and day. Last night was the first time she had some, she guzzled down 2 1/2 ounces, burped and passed out, it was wonderful! The ICU doc was a little hesitant about the breast milk, but a few of the nurses really pushed for it and I'm so thankful they did. I have no qualms about donor milk, it's pasteurized and the moms that donate it have been strictly screened, I'm so thankful they have donated so she can have a delicious meal again. The calorie count is different with the fat removed, so right now they're trying to figure out how to fortify it to bring it back up to the level she needs. The bank won't use my milk, I'm guessing it would "potentially contaminate" their machinery, but that's fine with me, that means I may actually have some stored up when all this is over with!
Overnight her RA lines (the IV lines that went directly into the right atrium) started to leak so they pulled those out this morning. Her only access is a peripheral IV in her left foot that we're guarding with our lives. Her other various "connections" are her two chest tubes and her nasal cannula and her continuous pulse oximetry. That count is way down from when she started almost two weeks ago. So far her nurse Jenny holds the record for removing the most "stuff" from her, I gave her credit for the chest tube, JP drain, pacer wires and art line on Saturday. She is pretty happy to hold the rank of leader. See, it's not all stuffy seriousness around here.
Saturday night I had a mini break down but yesterday was better. Christa came down and spent some time with me in the morning, I am so thankful for her, she is the best friend a girl could have. Jeremiah and I had lunch in the hospital cafeteria, the food was good for a Sunday and then my mom and I took Abby to the Disney Store to pick out a princess dress to wear for their upcoming trip to Disney World. Jeremiah and I went out to grab dinner at a pizzeria close to the hospital. I didn't spend very much time here yesterday, but I really think I needed that escape. I have been staying by her bedside day and night for almost her whole adventure here and I was starting to go a little crazy. I'm even trying to figure out which night I can go spend at home this week. I don't want to leave her, but she's fairly stable and the nurses take such wonderful care of her that I feel like one night away should be okay.
More pics:
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| Mmm, fat free breast milk with concentrated Tolerex, yum, yum. |
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| All wrapped up and sleepy after her bottle. |
Saturday, November 26, 2011
Weathering the storm
Weathered a rough night last night. Hannah Joy didn't want to sleep, she didn't want to eat, she didn't want to watch her mobile or suck on a pacifier or do anything else but cry. It was hard to watch and harder to experience. Neither one of us got much sleep past midnight. I couldn't put my finger on the source of her distress. Is she constipated from the iron supplements she gets? Does she want to eat something that tastes better than the Tolerex formula she has to eat (it smells a lot like glue by the way). Are her chest tubes/JP drain/femoral art line/sternum bothering her? Does she just want to be held? I think what it came down to was that she was having some withdrawal from the stronger pain meds she had been receiving. Bummer.
All I wanted was to pick her up and rock her and kiss her and sway and shush and hug. Sometimes you can feel so helpless in the PICU.
It's worse at night.
Then the sun came up. And the morning shift came on, one of my favorite nurses is back with her today. I got a shower, some coffee from the Ronald McDonald family room and the docs came in to round. They decided it was time to pull out some stuff. I'm thrilled! This morning she lost one chest tube, the JP drain, the pacer wires and the arterial line in her groin. I watched. It was fascinating. She received some pain meds before hand so she basically slept through the whole thing. I bet she's exhausted, she's still sleeping.
So now my adorable little four month old (today is her four month birthday) only has a whiff of oxygen by nasal cannula, one chest tube (it was putting out too much drainage to pull out and it still has to drain the chylos, that's the fatty stuff) and her central lines called the RAs that are running thru the skin of her chest directly into the right atrium of her heart, they're like fancy IVs.
I'm in a good mood right now. I could be delirious from the lack of sleep. Hannah is sleeping comfortably for the first time in about thirty six hours. I worry a little when this much good stuff happens at once because I know there are more lows coming, stuff will happen that will be another setback but I guess for now I can rest in this little victory. Only time will tell, and there are a lot of hours left in the day.
Oh, and the Cornhuskers won yesterday. Go Big Red!
All I wanted was to pick her up and rock her and kiss her and sway and shush and hug. Sometimes you can feel so helpless in the PICU.
It's worse at night.
Then the sun came up. And the morning shift came on, one of my favorite nurses is back with her today. I got a shower, some coffee from the Ronald McDonald family room and the docs came in to round. They decided it was time to pull out some stuff. I'm thrilled! This morning she lost one chest tube, the JP drain, the pacer wires and the arterial line in her groin. I watched. It was fascinating. She received some pain meds before hand so she basically slept through the whole thing. I bet she's exhausted, she's still sleeping.
So now my adorable little four month old (today is her four month birthday) only has a whiff of oxygen by nasal cannula, one chest tube (it was putting out too much drainage to pull out and it still has to drain the chylos, that's the fatty stuff) and her central lines called the RAs that are running thru the skin of her chest directly into the right atrium of her heart, they're like fancy IVs.
I'm in a good mood right now. I could be delirious from the lack of sleep. Hannah is sleeping comfortably for the first time in about thirty six hours. I worry a little when this much good stuff happens at once because I know there are more lows coming, stuff will happen that will be another setback but I guess for now I can rest in this little victory. Only time will tell, and there are a lot of hours left in the day.
Oh, and the Cornhuskers won yesterday. Go Big Red!
Thursday, November 24, 2011
Much to be thankful for
So I've written and rewritten this post in my head several times over about the last thirty hours. Early yesterday morning I was planning on writing a post titled "My three month old newborn" talking about how Hannah was starting to drink breastmilk from a bottle but ate every two hours overnight and how hard it was to change her diaper with all the lines and wires and how I felt like a new parent again. Then in the early afternoon yesterday I was preparing to write a blog called "Bumps in the road." That blog was going to be all about how hard it was to struggle with the set backs she experienced yesterday and how I'm just about done emotionally with all this stuff. But I didn't want to write a blog ranting and complaining about our hardships this close to Thanksgiving.
So I put it off. (You're surprised, I know. Me, stalling.) And I got some sleep, and I prayed a lot and this morning I took another therapeutic shower and now I'm ready to face the day again.
Yesterday morning Hannah's nurse noticed that one of her chest tubes had cloudy drainage in it. The cloudiness is caused by chyle (lymphatic fluids) leaking into her pleural cavity. In english, that means she has fat, namely triglycerides, leaking into her chest cavity. This happens sometimes after cardiac surgery and the longer you're on the bypass pump the greater your chances. Hannah was on the pump for a total of 218 minutes, thats a long enough time. This is a bummer of a setback for us.
To treat chylothorax we had to stop feeding Hannah breastmilk and switch her to a fat free formula. The time that she has to stay on this formula varies depending on how fast the chylothorax resolves. She is getting lipids through her central lines since she can't take in any fats orally. I'm bummed because I thought we were getting closer to breastfeeding again and getting the drains out. At least one of the chest tubes has to stay in until she stops leaking chyle, could be a few days, could be longer. She has to stay on the formula that whole time too. I'm hoping and praying that it resolves quickly and we can move forward.
She doesn't love the formula too much so the nurse put in an NG (naso gastric) feeding tube that goes up her nose, down the back of her throat and into her stomach. We try to get her to drink at least two ounces every four hours, if she doesn't finish her bottle she gets the rest poured into her feeding tube. She's sleeping better this morning and was almost in a good mood when the docs were in here doing bed rounds this am.
I'm so thankful for all the nurses and docs are doing for her, and I'm so thankful for all the well wishes and prayers everyone is sending our way. This is a bump in the road, sure, but when this all resolves and we walk out of here, whenever that is, we won't be coming back. There are kids in here who will endure years of heart surgery and all the complications that follow it; for Hannah, this is a one time thing.
I got to hold Hannah yesterday for the first time in a week. The nurse went through a lot of trouble to swaddle her and protect all her lines so that I could hold my baby for a few minutes. It was wonderful. I look forward to picking her up like it's no big deal again, I will never take holding my children for granted again. Also, she is weaning off her oxygen pretty well, hopefully it will be gone by the end of the day.
Please pray that Hannah's chylothorax resolves quickly, I'm not trying to be competitive or anything, but I would love for her to be the fastest resolving case of this that her doctors have ever seen. In the twenty five years that Dr. L the surgeon has been repairing VSDs he has never seen one in the spot where her second VSD was, so I would like to wow him again. Also pray that Jeremiah and I's spirits and attitudes can endure this, there are moments where I feel like we will be raising Hannah in this room. And this may sound selfish, but pray that my milk supply stays up and I can breastfeed Hannah again someday soon. She is my last baby and I had really hoped to feed her as long as I can. I love feeding Hannah, it's our quiet time, something special she and I share, and although bottle feeding can be special too, there's something extra special about being her source of food.
Happy Thanksgiving everyone!
Love, Jill, Jeremiah and Hannah Joy.
So I put it off. (You're surprised, I know. Me, stalling.) And I got some sleep, and I prayed a lot and this morning I took another therapeutic shower and now I'm ready to face the day again.
Yesterday morning Hannah's nurse noticed that one of her chest tubes had cloudy drainage in it. The cloudiness is caused by chyle (lymphatic fluids) leaking into her pleural cavity. In english, that means she has fat, namely triglycerides, leaking into her chest cavity. This happens sometimes after cardiac surgery and the longer you're on the bypass pump the greater your chances. Hannah was on the pump for a total of 218 minutes, thats a long enough time. This is a bummer of a setback for us.
To treat chylothorax we had to stop feeding Hannah breastmilk and switch her to a fat free formula. The time that she has to stay on this formula varies depending on how fast the chylothorax resolves. She is getting lipids through her central lines since she can't take in any fats orally. I'm bummed because I thought we were getting closer to breastfeeding again and getting the drains out. At least one of the chest tubes has to stay in until she stops leaking chyle, could be a few days, could be longer. She has to stay on the formula that whole time too. I'm hoping and praying that it resolves quickly and we can move forward.
She doesn't love the formula too much so the nurse put in an NG (naso gastric) feeding tube that goes up her nose, down the back of her throat and into her stomach. We try to get her to drink at least two ounces every four hours, if she doesn't finish her bottle she gets the rest poured into her feeding tube. She's sleeping better this morning and was almost in a good mood when the docs were in here doing bed rounds this am.
I'm so thankful for all the nurses and docs are doing for her, and I'm so thankful for all the well wishes and prayers everyone is sending our way. This is a bump in the road, sure, but when this all resolves and we walk out of here, whenever that is, we won't be coming back. There are kids in here who will endure years of heart surgery and all the complications that follow it; for Hannah, this is a one time thing.
I got to hold Hannah yesterday for the first time in a week. The nurse went through a lot of trouble to swaddle her and protect all her lines so that I could hold my baby for a few minutes. It was wonderful. I look forward to picking her up like it's no big deal again, I will never take holding my children for granted again. Also, she is weaning off her oxygen pretty well, hopefully it will be gone by the end of the day.
Please pray that Hannah's chylothorax resolves quickly, I'm not trying to be competitive or anything, but I would love for her to be the fastest resolving case of this that her doctors have ever seen. In the twenty five years that Dr. L the surgeon has been repairing VSDs he has never seen one in the spot where her second VSD was, so I would like to wow him again. Also pray that Jeremiah and I's spirits and attitudes can endure this, there are moments where I feel like we will be raising Hannah in this room. And this may sound selfish, but pray that my milk supply stays up and I can breastfeed Hannah again someday soon. She is my last baby and I had really hoped to feed her as long as I can. I love feeding Hannah, it's our quiet time, something special she and I share, and although bottle feeding can be special too, there's something extra special about being her source of food.
Happy Thanksgiving everyone!
Love, Jill, Jeremiah and Hannah Joy.
Monday, November 21, 2011
Little froggy cry
We have had a pretty good day today. Hannah had her breathing tube removed late in the morning and has been on a roll since then. She is receiving less pain medicine than before, so she is a little crabby. I think her throat is probably a little sore, she's probably hurting from her chest, her right foot hurts from that IV, she's tired of lying in bed, she doesn't like having 5 liters of oxygen forced up her nose and I think she's overly tired. Still, it's so great to see her little face without her breathing tube.
Really, this whole part will be over soon.
She has been fussy this afternoon, she has a little hoarse, froggy throated cry. It was really weak at first, we could barely hear her at all, it's getting a little stronger this evening. She is currently lying in her crib, loosely swaddled staring up at the mobile above her head. She received some pin meds a little while ago so I'm wondering if the lights are kind of "trippy." Every so often she lets out a little froggy cry, like, "oh, I'm over this and I'm not so happy." Then she's quiet.
We aren't able to hold her yet, we're still waiting for the RA lines and chest tubes to come out. The nurse let me cuddle her in her crib today, I couldn't really pick her up, but I was able to put an arm under her head and snuggle up close to her. She has been intubated for five days, but her tiny little baby breath was the best smelling thing in the world!
Over the next few days she will hopefully start eating again, first from a bottle then hopefully back to breastfeeding. We're hoping her kidneys start taking over their usual function soon, she has been leaking a lot of fluids from JP drain in her abdomen, she needs to be peeing them out instead.
Her surgeon came in after her tube was out just to see how she looked. He was quite pleased to see her little face, as were we. He is going out of town for Thanksgiving. I hope we are gone by the time he gets back, but we'll just have to see.
Much love to all.
Really, this whole part will be over soon.
She has been fussy this afternoon, she has a little hoarse, froggy throated cry. It was really weak at first, we could barely hear her at all, it's getting a little stronger this evening. She is currently lying in her crib, loosely swaddled staring up at the mobile above her head. She received some pin meds a little while ago so I'm wondering if the lights are kind of "trippy." Every so often she lets out a little froggy cry, like, "oh, I'm over this and I'm not so happy." Then she's quiet.
We aren't able to hold her yet, we're still waiting for the RA lines and chest tubes to come out. The nurse let me cuddle her in her crib today, I couldn't really pick her up, but I was able to put an arm under her head and snuggle up close to her. She has been intubated for five days, but her tiny little baby breath was the best smelling thing in the world!
Over the next few days she will hopefully start eating again, first from a bottle then hopefully back to breastfeeding. We're hoping her kidneys start taking over their usual function soon, she has been leaking a lot of fluids from JP drain in her abdomen, she needs to be peeing them out instead.
Her surgeon came in after her tube was out just to see how she looked. He was quite pleased to see her little face, as were we. He is going out of town for Thanksgiving. I hope we are gone by the time he gets back, but we'll just have to see.
Much love to all.
Saturday, November 19, 2011
This one has pictures!
So I have a few pictures for those who want to see them at the end of this blog entry. Some people may be shocked or bothered seeing Hannah and all her "stuff." Remember that she is neither sick nor dying and that all this stuff is there to help her. It will start coming off soon and all be a distant memory. If you don't want to see them then don't scroll down to the bottom.
Hannah has had the typical ups and downs the last few days and nights. She'll do really well for a few hours, then face a little set back, then after a few hours of that she is back on the right track. I was a little overly optimistic with my last post, she is still intubated, but they are weaning her down off the ventilator and she is initiating most of those breaths on her own. Hopefully the breathing tube can come out tomorrow evening or Monday morning. She has been weaned off a sedation med and one of her blood pressure meds, but has picked up an antibiotic in the mean time. Her temp goes up, it comes down, it goes up, comes down, so on and so forth. They unhooked her pacer wires (like an external pace maker) two days ago. She lost a peripheral IV yesterday morning but they haven't had to put another one in.
The nurses here continue to take excellent care of Hannah and us. Today Hannah and her nurse made a hand turkey, it's very cute. She has a kimono and a hat made by volunteers and some socks that are WAY to big, she's picking up swag all over the place. Everyone who comes into her room remarks how cute she is, I can't wait for her to wake up and start flashing her smile, then she'll really knock their socks off!
This evening she woke up and was as coherent as she has been since the surgery. She turned towards Jeremiah and I and focused her eyes a little and even tried to smile at us. Then she fell asleep, that must have been exhausting. It was exciting for us, I'm so eager for her to start progressing and smiling at us again.
My new favorite thing? Hannah sucks on her breathing tube like it was a pacifier. Sometimes when she really gets going you can hear it all over the room!
I have been singing a song in my head on and off for about a week now. It's "Rise" by Shawn McDonald. We had a little bit of a rough night last night so this morning I stood in the hot shower for awhile and sang out loud until I felt strong enough to take on another day in the PICU.
From this trouble I have found
And this rubble on the ground
I will rise
Cause He who is in me
Is greater than I will ever be
And I will rise...
Ready for some pictures now?
We'll start out slow.
And finally:
Hannah has had the typical ups and downs the last few days and nights. She'll do really well for a few hours, then face a little set back, then after a few hours of that she is back on the right track. I was a little overly optimistic with my last post, she is still intubated, but they are weaning her down off the ventilator and she is initiating most of those breaths on her own. Hopefully the breathing tube can come out tomorrow evening or Monday morning. She has been weaned off a sedation med and one of her blood pressure meds, but has picked up an antibiotic in the mean time. Her temp goes up, it comes down, it goes up, comes down, so on and so forth. They unhooked her pacer wires (like an external pace maker) two days ago. She lost a peripheral IV yesterday morning but they haven't had to put another one in.
The nurses here continue to take excellent care of Hannah and us. Today Hannah and her nurse made a hand turkey, it's very cute. She has a kimono and a hat made by volunteers and some socks that are WAY to big, she's picking up swag all over the place. Everyone who comes into her room remarks how cute she is, I can't wait for her to wake up and start flashing her smile, then she'll really knock their socks off!
This evening she woke up and was as coherent as she has been since the surgery. She turned towards Jeremiah and I and focused her eyes a little and even tried to smile at us. Then she fell asleep, that must have been exhausting. It was exciting for us, I'm so eager for her to start progressing and smiling at us again.
My new favorite thing? Hannah sucks on her breathing tube like it was a pacifier. Sometimes when she really gets going you can hear it all over the room!
I have been singing a song in my head on and off for about a week now. It's "Rise" by Shawn McDonald. We had a little bit of a rough night last night so this morning I stood in the hot shower for awhile and sang out loud until I felt strong enough to take on another day in the PICU.
Yes I will rise
Out of these ashes, riseFrom this trouble I have found
And this rubble on the ground
I will rise
Cause He who is in me
Is greater than I will ever be
And I will rise...
Ready for some pictures now?
We'll start out slow.
 |
| Here is her little hand turkey! Isn't it so cute! |
 |
| So she is sleeping comfortably, she mostly sleeps all day at this point. She has her breathing tube in, her nifty headband is actually sensors that tell us how well her brain is being perfused with blood, and you can see most of her incision with the steristrips on it. It's a little pink, that's why she's receiving antibiotics in case that's the start of an infection. |
 |
| Hannah is the little lump of blankets in the middle of the bed. We've already gotten rid of two IV pumps! |
And finally:
 |
| Me and my baby girl, she is just the cutest kid that has ever stayed in this PICU! |
Thursday, November 17, 2011
The roller coaster ride
We are beginning to understand the ways of the PICU. It is a roller coaster ride of emotions and patient status and well being. It is two steps forward and one step back, which is to be expected. Thankfully it is not one step forward and two steps back. It is beeping alarms and eight IV pumps going at the same time. It is bedside change of shift report that lasts for a half hour on one kid (mine) and 7am rounds with the cardiologist, the surgeon and the intensivist. Currently it is a way of life and consumes me entirely.
I have said it before, but I look forward to the day when this blog goes back to being about everyday nothings.
I will start at the beginning. Hannah had her surgery on Wednesday morning. The surgeon closed the VSD and took her off bypass, then they did an ECHO and discovered another VSD that was tucked up way underneath the tricuspid valve. So back on bypass (thankfully they do the ECHO before finishing the close) and they fixed the second VSD. The surgeon also placed a stitch in the ASD. They ended up having to leave her chest open overnight because she didn't tolerate closing it all the way. She had some slight swelling and irritation of her heart and started to have low blood pressures, hence the big hole she came to the PICU with. The surgeon had placed a patch over the hole and we couldn't exactly see her heart beating through it, but we could see the patch moving because of the vibrations of her heart. This was fascinating to me. From the moment I handed her over to the nurse at the OR doors I have felt peace. It is surely only due to the prayers of all my friends and family and complete strangers!
I spent the night in the PICU last night, I will again tonight. I did not get too much sleep last night. Hannah was struggling with low blood pressures and an occasional irregular heartbeat and a few other things. Needless to say her nurse earned her paycheck last night. Hannah was a 1:1 and her nurse rarely left her side. There were a few times when Hannah was acting up that most of the night staff were in her room. These women are wonderful, I cannot say that enough. Watching it from a nurse's perspective I have to say they worked so well as a team, so supportive of one another and working so hard to give my little peanut girl the best care. From a mother's perspective I saw angels, caring for my baby.
This morning the cardiovascular surgeon and the cardiologist came in and decided it was time to close the hole. They brought the OR team with them and closed it right here in her room. I would have loved to put on some scrubs and watch, but probably only if it wasn't MY baby. I'm experiencing something I hadn't planned on: I'm fascinated by all the medical stuff going on around me. It kinda makes me wish I was a PICU nurse!
The rest of the day had been on and off exciting. She ended up needing some pace maker type help for about an hour late in the morning, but the surgeon and cardiologist assured us she is not doing anything they wouldn't expect her to do.
Tomorrow hopefully we start to loose some of the "stuff" attached to her. The vent and the blood pressure meds will be the first to go, I'm excited about that.
Will keep you posted...
I have said it before, but I look forward to the day when this blog goes back to being about everyday nothings.
I will start at the beginning. Hannah had her surgery on Wednesday morning. The surgeon closed the VSD and took her off bypass, then they did an ECHO and discovered another VSD that was tucked up way underneath the tricuspid valve. So back on bypass (thankfully they do the ECHO before finishing the close) and they fixed the second VSD. The surgeon also placed a stitch in the ASD. They ended up having to leave her chest open overnight because she didn't tolerate closing it all the way. She had some slight swelling and irritation of her heart and started to have low blood pressures, hence the big hole she came to the PICU with. The surgeon had placed a patch over the hole and we couldn't exactly see her heart beating through it, but we could see the patch moving because of the vibrations of her heart. This was fascinating to me. From the moment I handed her over to the nurse at the OR doors I have felt peace. It is surely only due to the prayers of all my friends and family and complete strangers!
I spent the night in the PICU last night, I will again tonight. I did not get too much sleep last night. Hannah was struggling with low blood pressures and an occasional irregular heartbeat and a few other things. Needless to say her nurse earned her paycheck last night. Hannah was a 1:1 and her nurse rarely left her side. There were a few times when Hannah was acting up that most of the night staff were in her room. These women are wonderful, I cannot say that enough. Watching it from a nurse's perspective I have to say they worked so well as a team, so supportive of one another and working so hard to give my little peanut girl the best care. From a mother's perspective I saw angels, caring for my baby.
This morning the cardiovascular surgeon and the cardiologist came in and decided it was time to close the hole. They brought the OR team with them and closed it right here in her room. I would have loved to put on some scrubs and watch, but probably only if it wasn't MY baby. I'm experiencing something I hadn't planned on: I'm fascinated by all the medical stuff going on around me. It kinda makes me wish I was a PICU nurse!
The rest of the day had been on and off exciting. She ended up needing some pace maker type help for about an hour late in the morning, but the surgeon and cardiologist assured us she is not doing anything they wouldn't expect her to do.
Tomorrow hopefully we start to loose some of the "stuff" attached to her. The vent and the blood pressure meds will be the first to go, I'm excited about that.
Will keep you posted...
Monday, November 14, 2011
Almost there...
Had the trial run down to PSL this morning. We found the parking garage we DO NOT want to park in on Wednesday. The Rocky Mountain Hospital for Children at PSL (that's their official name or something like that!) is heavy on the waiting rooms, and thankfully, bathrooms. I love children's hospitals. When I was in nursing school I was a clinical aide at The Childrens Hospital here in Denver, I loved that place, it's true that children are not just small people.
We met Dr. L, the surgeon, everything I had heard about him having a great bedside manner and being really friendly and knowledgable was true. He explained at length all about the anatomy of her VSD and the repair and her recovery, it was wonderful. Having all the info makes me nervous and then a little less nervous because I'm a planner and I like to know what's coming. She had her ECHO, EKG and a bunch of lab work and Jeremiah and I took a tour of the hospital while she was having all that done. Jeremiah and my Mom even donated a pint of blood each for the baby if she needs it during surgery. They said it wasn't all that bad, maybe I will even be able to convince them to do it again sometime.
I feel really at peace about her surgery right now. I'm sure I'll freak out later, and then be fine again and then freak out again and back and forth several times before Wednesday morning. I keep placing my hand on her little chest, so smooth and perfect, I can feel her heart beating inside. I don't want her to have a wound there, a scar to remind us of all this, but she will, and I'm sure that with time it will fade, just as some of the emotions surrounding all this will fade. She will never remember her surgery, I'm thankful for that.
I have a list of things to do to occupy the time between now and Wednesday morning. Laundry, packing, getting the house in order for me to be gone for awhile, spending time with Abby and Eli and Jeremiah. On the agenda for tonight? Dinner date with my husband to Ikea to look at new drinking glasses, ah the joys of an everyday life, I savor them! Thanks Mom for watching the kids so Jer and I can spend a little time alone together.
Until next time...
We met Dr. L, the surgeon, everything I had heard about him having a great bedside manner and being really friendly and knowledgable was true. He explained at length all about the anatomy of her VSD and the repair and her recovery, it was wonderful. Having all the info makes me nervous and then a little less nervous because I'm a planner and I like to know what's coming. She had her ECHO, EKG and a bunch of lab work and Jeremiah and I took a tour of the hospital while she was having all that done. Jeremiah and my Mom even donated a pint of blood each for the baby if she needs it during surgery. They said it wasn't all that bad, maybe I will even be able to convince them to do it again sometime.
I feel really at peace about her surgery right now. I'm sure I'll freak out later, and then be fine again and then freak out again and back and forth several times before Wednesday morning. I keep placing my hand on her little chest, so smooth and perfect, I can feel her heart beating inside. I don't want her to have a wound there, a scar to remind us of all this, but she will, and I'm sure that with time it will fade, just as some of the emotions surrounding all this will fade. She will never remember her surgery, I'm thankful for that.
I have a list of things to do to occupy the time between now and Wednesday morning. Laundry, packing, getting the house in order for me to be gone for awhile, spending time with Abby and Eli and Jeremiah. On the agenda for tonight? Dinner date with my husband to Ikea to look at new drinking glasses, ah the joys of an everyday life, I savor them! Thanks Mom for watching the kids so Jer and I can spend a little time alone together.
Until next time...
Thursday, November 10, 2011
Some of my thoughts...
Well Hannah's surgery is scheduled for next Wednesday the 16th. I am eager to get it over with. We have some pre-op stuff on Monday morning, blood work and a sedated echocardiogram (ECHO) to get a very detailed look at her heart. I'm hoping they explain a little more about the surgery and her recovery at that appointment because I'm not sure what is really going down on Wednesday.
There are a lot of things going through my mind right now. I am experiencing a little tunnel vision, like I'm stuck in this heart surgery black hole or something. I'm sure there is stuff going on with Abby and Eli that I'm missing out on and my household is beginning to suffer a little bit, the place is a mess and I was late on a few bills; I will be so glad when this is all behind us.
I'm trying to prepare myself for what will happen in the hours and days after Hannah's surgery. I can't decide if it's better to be a nurse or not. I honestly don't remember a lot of cardiac stuff, I was not very good with the cardiovascular system and all the medications and I certainly don't know how you perform the surgery that Hannah will have. All I know is I'm going to hand them my little baby who looks perfectly healthy and when she comes back to me she will look sick. I'm trying to mentally prep myself for that, and I'm packing a big box of kleenex too.
I also feel like I need to explain something. Hannah's heart defects, the PDA, ASD and VSD are some of the most common congenital heart defects. I'm not sure about the statistics, I haven't done to much research online, I'm not sure why that is, but the cardiologist told us that this is one of the easier surgeries the surgeons perform. When compared to some of the other heart defects out there this is a piece of cake. Still, she's my little baby and I've never been through something like this, so to me it's still a big deal.
I've been following another blog on and off for sometime now. If you're in the mood for a good story and a good cry go over to BowensHeart.com. This is the blog by Matt and Sarah Hammitt, Bowen's parents. Matt is the lead singer for the Christian band Sanctus Real and they started the blog after they discovered that their unborn son had hypoplastic left heart syndrome. Bowen recently celebrated his first birthday and he is a little miracle. I've been reading about him since before I was ever pregnant with Hannah but it took on a different meaning after we had her. It has been both terrifying and comforting to read it. If you're at all nervous about Hannah's surgery you may want to wait until after she is stable and recovering, but I would recommend it to everyone.
I will continue to blog with updates from time to time. I look forward to the time when this blog goes back to ranting about raising children and sharing my random and funny thoughts on life. Hannah says hi.
There are a lot of things going through my mind right now. I am experiencing a little tunnel vision, like I'm stuck in this heart surgery black hole or something. I'm sure there is stuff going on with Abby and Eli that I'm missing out on and my household is beginning to suffer a little bit, the place is a mess and I was late on a few bills; I will be so glad when this is all behind us.
I'm trying to prepare myself for what will happen in the hours and days after Hannah's surgery. I can't decide if it's better to be a nurse or not. I honestly don't remember a lot of cardiac stuff, I was not very good with the cardiovascular system and all the medications and I certainly don't know how you perform the surgery that Hannah will have. All I know is I'm going to hand them my little baby who looks perfectly healthy and when she comes back to me she will look sick. I'm trying to mentally prep myself for that, and I'm packing a big box of kleenex too.
I also feel like I need to explain something. Hannah's heart defects, the PDA, ASD and VSD are some of the most common congenital heart defects. I'm not sure about the statistics, I haven't done to much research online, I'm not sure why that is, but the cardiologist told us that this is one of the easier surgeries the surgeons perform. When compared to some of the other heart defects out there this is a piece of cake. Still, she's my little baby and I've never been through something like this, so to me it's still a big deal.
I've been following another blog on and off for sometime now. If you're in the mood for a good story and a good cry go over to BowensHeart.com. This is the blog by Matt and Sarah Hammitt, Bowen's parents. Matt is the lead singer for the Christian band Sanctus Real and they started the blog after they discovered that their unborn son had hypoplastic left heart syndrome. Bowen recently celebrated his first birthday and he is a little miracle. I've been reading about him since before I was ever pregnant with Hannah but it took on a different meaning after we had her. It has been both terrifying and comforting to read it. If you're at all nervous about Hannah's surgery you may want to wait until after she is stable and recovering, but I would recommend it to everyone.
I will continue to blog with updates from time to time. I look forward to the time when this blog goes back to ranting about raising children and sharing my random and funny thoughts on life. Hannah says hi.
Tuesday, November 1, 2011
Waiting for the phone to ring
November is here. I have a feeling this month is going to go by in a speedy blur. I'm still in the midst of that postpartum fog, the one that lasts for the first year or so due to lack of sleep and hormones and other factors.
Today was the day when Hannah's cardiologist, the amazing Dr. C was going to meet with all the other docs and surgeons in their group to discuss all the potential and upcoming surgery cases. They agreed that Hannah needs surgery to repair the holes in her heart, and now is the time to do it. So now I'm just hanging out waiting for the surgeon's office to call me and schedule her surgery. Dr. C was kind of funny on the phone, he must have all kinds of parents he has to break this sort of news too, and I'm sure everyone reacts differently. He asked me how I felt about Hannah's surgery and I told him flat out, "I'm ready, bring it on." I could almost hear him smile knowingly over the phone, "I know you're ready," he said.
So now I'm just waiting for the phone to ring to schedule her surgery date. The surgeon is out of town next week so it will hopefully be the week after that. It's not like I have to work the timing around my other appointments, I'm pretty sure I can cancel my hair appointment. But looking ahead at the calendar I'm guessing I will be sampling the fine dining experience that is Thanksgiving at Pres/St. Lukes. Hospital turkey isn't all that bad, I think I've had more Turkey day dinners in the last ten years at the hospital I work at than I have at home.
I'm not sure what to expect. I keep going back and forth from being excited that this is really going to happen soon to being really nervous that this is going to happen soon. Thankfully the cumulative sleep loss of the last three months is helping me to be exhausted enough to sleep at night instead of lying in bed worried about surgery. The stress is a little much, I've got a horrible head cold, the backs of my eyes hurt and I have a knot under my left shoulder blade that any good Boy Scout would be proud of. But there is a light at the end of the tunnel, and I'm thankful for that.
Stay tuned...
Wednesday, October 26, 2011
Li'l Miss Swiss Cheese Heart
Hannah and I bundled up today and went to see her cardiologist. I'm happy to say that may be one of our last visits! That's because Dr. C said he sees no reason to put off her surgery any longer and he will be presenting her case to the surgeons for consideration at their conference on Tuesday. Hooray! I felt a little weird during the appointment when I was getting excited about her surgery. I'm sure at some point it will hit me and I will get scared and nervous and cry again, but for now I'm relieved.
So here are the answers to some of your questions:
-Hannah breathes fast. Like 80 breaths a minute when she's awake. This is pretty much her norm and has been since birth, but she's going to start tiring out soon. Fixing the holes in her heart will cure that.
-Ready to get your Google on: Hannah has an atrial septal defect (ASD) which the cardiologist said is more like a patent foramen ovale (PFO), two ventricular septal defects (VSD) one is kind of in front of the other, and a patent ductus arteriosus (PDA), these are the holes the surgeon will close. There are some other little variations in her heart that the doc said are like little oddities that they don't need to fix and won't affect her at all. I can picture the surgeons getting into her little chest and going, "huh, look at that..."
-Her heart was enlarged a little at the last appt in September, it's working harder to pump the blood thru her body, it's a muscle, therefore it grows. Now the left ventricle is starting to enlarge as well.
-She is not gaining weight as fast as she used too, she was 6 lbs 14 oz today with a wet diaper on! She should be 7 lbs or more if she was following her growth curve.
-Once the surgeons decide it's time to do surgery it should only take a week or two to get her on the schedule.
-She will probably be in the hospital for a week or maybe two after her surgery, it all depends on how well and soon she can start eating again.
And lastly:
-It's open heart surgery. That one took me awhile to wrap my mind around. There are some other complex details that I'm probably forgetting for now, but that touches the surface.
So I'm happy. And excited to get this all over with and behind us. I'm nervous about surgery, but I've already had a chance to roll some of that around in my head for awhile, so I'm not as freaked out about it.
So be praying that the surgeons accept Hannah for surgery, that we can schedule it really soon and that she stay healthy so she can have surgery when it's scheduled. I think I'm going to go buy a Costco size bottle of hand sanitizer and slather the other two kids in it daily. You can email me questions, thanks for reading!
Saturday, October 1, 2011
Back to the grind
Yesterday was my first day back to work. I must admit that I really didn't want to go back, not in the least bit, not at all. But I had to go back, and it really wasn't that bad.
Don't get me wrong, I love my co-workers, my friends at work. For the last few weeks leading up to Hannah's birth when I was so stressed out everyone took care of me. They listened to my worries and assured me that she would be okay and that whatever happened they would be there for me. When Hannah was born they all came to celebrate and congratulate! They decorated my postpartum room for me, everyone came in to visit, I felt immensely loved!
Then I went home.
I missed my friends at work for the first several days. I spent the first 3 weeks or so of my maternity leave texting my work buddies. I felt a little lonely, a little left out of all the excitement at work. Eventually it wore off.
I live in a weird world. I desire to be a stay at home mom, yet I desire to be at work. I'm sure there are several thousands of women out there just like me. When I'm home I'm happy, I've really learned to embrace my home and my family and my roles as a wife and mother while I've been on maternity leave this time. There was no stress of, "I have to get all this done today because I have to work tomorrow and then have a ton of stuff to do the next day" stuff. I didn't worry about how little sleep I was getting because it's not like I had to wake up before the sun and go be responsible for 8 perfect strangers for 12 hours. When I'm home I'm only responsible for my family, and it's okay if I'm a little tired, cranky, foggy, late. Theres's laundry and cooking and cleaning and kids, but there is no charting.
Man I hate charting.
When I'm at work I'm happy. I have my friends, some of them like family. We chat, we catch up, we help each other out, we suffer together when it's tough. There are wonderful families that I get to take care of, they welcome me into their lives for a brief bit of it and I enjoy it, most of the time. Sometimes I get to be present at the birth of babies, that is probably my favorite. It's exciting, terrifying, emotional. We may be extremely busy some days, I get tired and I really don't want to do another delivery, but then I go and I watch a new person take their very first breaths and the parents cry and it's worth it. It's fun to spend time with the new parents, watch them learn to care for their new baby, answer their questions and teach them how to change a diaper, feed and burp their baby, it's fun, except for the charting.
Sometimes I feel like I have two personalities. Well, not two different personalities, but there are two halves of me. The work me is better organized, more disciplined, generally more professional and courteous, the home me is more laid back, lazier, easily distracted, ditzy and sometimes a little cranky. But I'm happy at both places. And I'm fun at both places. I use humor at work to make it through the day, I use kid humor at home to make it through the day. I do thrive on being around my work friends, you can tell when I've been off for several days because I talk non-stop, I need to be in on every conversation, I'm a little starved for adult interactions. I also need quiet time at home, not talking to everyone about everything, just sitting on the couch cuddling my kids or folding laundry.
I wrestle with this from time to time, wondering if I'm doing the right thing by working. I'm a good nurse, I'm good at what I do, am I as good at being a mom? I feel like I'm learning to be a good mom, it's a constant work in progress. It's easier to be a nurse than a mom. For one thing, I had four years of training to be a nurse. I had to pass a test, I'm licensed. I have proficiencies and skills I need to keep up to date at work. I'm just kind of winging this whole mom thing. It's more like on the job training. But it's the most important job I have, being a wife and mother. And I'm learning to work as hard at that as I do at work. So maybe this whole work thing, this whole being a nurse thing can help me be a good mom. I guess maybe that's why I work. I like work, I love being a mom. And at home, there is no charting.
Don't get me wrong, I love my co-workers, my friends at work. For the last few weeks leading up to Hannah's birth when I was so stressed out everyone took care of me. They listened to my worries and assured me that she would be okay and that whatever happened they would be there for me. When Hannah was born they all came to celebrate and congratulate! They decorated my postpartum room for me, everyone came in to visit, I felt immensely loved!
Then I went home.
I missed my friends at work for the first several days. I spent the first 3 weeks or so of my maternity leave texting my work buddies. I felt a little lonely, a little left out of all the excitement at work. Eventually it wore off.
I live in a weird world. I desire to be a stay at home mom, yet I desire to be at work. I'm sure there are several thousands of women out there just like me. When I'm home I'm happy, I've really learned to embrace my home and my family and my roles as a wife and mother while I've been on maternity leave this time. There was no stress of, "I have to get all this done today because I have to work tomorrow and then have a ton of stuff to do the next day" stuff. I didn't worry about how little sleep I was getting because it's not like I had to wake up before the sun and go be responsible for 8 perfect strangers for 12 hours. When I'm home I'm only responsible for my family, and it's okay if I'm a little tired, cranky, foggy, late. Theres's laundry and cooking and cleaning and kids, but there is no charting.
Man I hate charting.
When I'm at work I'm happy. I have my friends, some of them like family. We chat, we catch up, we help each other out, we suffer together when it's tough. There are wonderful families that I get to take care of, they welcome me into their lives for a brief bit of it and I enjoy it, most of the time. Sometimes I get to be present at the birth of babies, that is probably my favorite. It's exciting, terrifying, emotional. We may be extremely busy some days, I get tired and I really don't want to do another delivery, but then I go and I watch a new person take their very first breaths and the parents cry and it's worth it. It's fun to spend time with the new parents, watch them learn to care for their new baby, answer their questions and teach them how to change a diaper, feed and burp their baby, it's fun, except for the charting.
Sometimes I feel like I have two personalities. Well, not two different personalities, but there are two halves of me. The work me is better organized, more disciplined, generally more professional and courteous, the home me is more laid back, lazier, easily distracted, ditzy and sometimes a little cranky. But I'm happy at both places. And I'm fun at both places. I use humor at work to make it through the day, I use kid humor at home to make it through the day. I do thrive on being around my work friends, you can tell when I've been off for several days because I talk non-stop, I need to be in on every conversation, I'm a little starved for adult interactions. I also need quiet time at home, not talking to everyone about everything, just sitting on the couch cuddling my kids or folding laundry.
I wrestle with this from time to time, wondering if I'm doing the right thing by working. I'm a good nurse, I'm good at what I do, am I as good at being a mom? I feel like I'm learning to be a good mom, it's a constant work in progress. It's easier to be a nurse than a mom. For one thing, I had four years of training to be a nurse. I had to pass a test, I'm licensed. I have proficiencies and skills I need to keep up to date at work. I'm just kind of winging this whole mom thing. It's more like on the job training. But it's the most important job I have, being a wife and mother. And I'm learning to work as hard at that as I do at work. So maybe this whole work thing, this whole being a nurse thing can help me be a good mom. I guess maybe that's why I work. I like work, I love being a mom. And at home, there is no charting.
Wednesday, August 10, 2011
Where I've been.
(Warning, this one is LONG)
Well it's been about 3 months since I last posted an entry. I guess you could say I took the summer off. It started out with me just not being on the computer very often, we played outside and went swimming and all the other summer activities and being on the computer fell to the wayside. Then, as the temperature climbed we spent more time in the air conditioned house and I still didn't blog. Now I'm so far behind that I could write a novel, it may take me weeks to catch up with all the stuff that has happened this summer.
Here's the Cliff Notes version of our summer:
Went swimming, planted a garden, chickens started laying eggs, Eli skinned his knees, Abby rode her bike and played with the neighborhood kids, went to visit family in Kansas City, Eli got splinters in his hands, worked a lot, was hot, ate a lot of frozen yogurt, bought bunk beds and Eli moved into Abby's room, got mosquito bites, finished the nursery, laundry, had a lot of doctor's appts for the baby, was scared the baby might be really sick, Jeremiah and Abby camped in the backyard, was induced, had a tiny baby, brought her home, Abby started kindergarten, made zucchini bread.
No wonder I'm tired. And we didn't even get to go to the zoo.
A lot of my summer was eaten up by various doctor's appointments. The baby was on the smaller side at her 20 week ultrasound, so we did a follow up 30 week ultrasound and she was still small, so we did another one at 33 weeks and she was even smaller at that one. She went from 16th percentile on the growth chart to 7th percentile. So then I had to go to weekly appts at the perinatologist from 34 to 37 weeks and get ultrasounds and biophysical profiles and non-stress tests and it all got rather boring. By 36 weeks she had fallen off the growth chart and they were estimating she was 3 pounds 12 ounces (to compare, my other two children were about a pound bigger at that stage). There was talk of hospitalization, bed rest, early delivery, so on and so on. Each week I would go to the appts and watch my little girl on the ultrasound screen. She would kick and roll and wiggle around, she had the hiccups, she practiced her breathing movements, she sucked on her knee and fingers and thumb, she even peed once (we could see a full bladder, then the next thing, it was empty!) The perinatologist would come in and tell me that the placenta looked good, and there was adequate fluid and the dopplers were good and she was looking great, so then, why, I wondered, was I doing all this extra testing? And why was she so small?
I finally asked my own OB what the deal was? Why is she so small? Should I be on bedrest? Should I stop working? Can I drink protein supplements to help her? She told me what the perinatologist told her, that they still believed, as they had all along, that our baby had down syndrome and that she was just genetically made to be small and I couldn't change that (so why try, it felt like they were saying).
I cried when I got off the phone.
I had all but dropped the down syndrome thing from my mind. It all came rushing back to the surface. The same fears awakened, only now my due date was so close, the nursery was finished and her tiny clothes hung in the closet and I wondered if we would be bringing her home or if she would be staying in the NICU for weeks.
I would go to work and talk to my nurse friends there. I decided to share the whole story with them, the truth would come out eventually. They listened with sympathetic ears and reassured me that the doctors were wrong. My husband claimed the perinatologist was an idiot and declared it all a cruddy placenta at fault (I've had problems with my placentas breaking down early in the past). Everyone reminded me that we would love our baby girl, no matter what. But still in the middle of the night I worried. I wondered what would happen the day she was born. I worried as my induction date crept nearer that she would be to small to stay in the well baby nursery, that her lungs wouldn't be mature, that something else would go wrong. Maybe she wouldn't tolerate labor and I would end up with an emergency c-section.
We shared with our friends, with Jeremiah's parents, we kept the whole thing from my parents. Sorry Mom and Dad, you know now, but we knew you wouldn't sleep a wink if we told you the whole story. And I was not sleeping enough for everyone.
On Tuesday, July 26th, our daughter, Hannah Joy was born. I was induced and delivered without to much incident. Everything started out really slow, and then suddenly I was ready to push and the doctor almost didn't make it. There were a lot of people in the room. Jeremiah and my best friend, my mom and his step-mom, at least 2 L&D nurses, my OB, the neonatal nurse practitioner and a nursery nurse, there may have been more, I really don't remember. Hannah came out screaming and squirming and peed on my doctor who gently placed her on my stomach after Jeremiah cut the cord, the NNP looked her over and told me she looked perfect, and a whole new wave of tears hit me. She was screaming and pink and in no sign of respiratory distress, just tiny, and she didn't have down syndrome. Everyone in the room was crying. Jeremiah and I were so happy and so relieved, we were overjoyed at her birth, that's where we got her middle name from. My placenta was tiny, and looked old and broken down.
I wrestled with whether or not to blog about all this. So many of my friends and coworkers already know the story, but not everyone does. And how much of my own emotions and fears did I want to share with the internet? I've wrestled with my thoughts since Hannah's birth. Relieved that she doesn't have down syndrome and feeling guilty about it. Like I'd missed a bullet or something. I was worried sick about what might be while I was still pregnant. I prayed and prayed that she would be okay, whatever okay was, healthy and strong, and that God would help me to love her and comfort my aching heart. Hannah was born healthy and strong, just the way God had made her, and I love her so much. I don't love God more or less because of my youngest daughter, but the whole experience has brought me closer to my husband, and closer to God.
I could go on and on, and I probably will in the future, but it's getting late, this is getting long, and I need to feed Hannah.
Well it's been about 3 months since I last posted an entry. I guess you could say I took the summer off. It started out with me just not being on the computer very often, we played outside and went swimming and all the other summer activities and being on the computer fell to the wayside. Then, as the temperature climbed we spent more time in the air conditioned house and I still didn't blog. Now I'm so far behind that I could write a novel, it may take me weeks to catch up with all the stuff that has happened this summer.
Here's the Cliff Notes version of our summer:
Went swimming, planted a garden, chickens started laying eggs, Eli skinned his knees, Abby rode her bike and played with the neighborhood kids, went to visit family in Kansas City, Eli got splinters in his hands, worked a lot, was hot, ate a lot of frozen yogurt, bought bunk beds and Eli moved into Abby's room, got mosquito bites, finished the nursery, laundry, had a lot of doctor's appts for the baby, was scared the baby might be really sick, Jeremiah and Abby camped in the backyard, was induced, had a tiny baby, brought her home, Abby started kindergarten, made zucchini bread.
No wonder I'm tired. And we didn't even get to go to the zoo.
A lot of my summer was eaten up by various doctor's appointments. The baby was on the smaller side at her 20 week ultrasound, so we did a follow up 30 week ultrasound and she was still small, so we did another one at 33 weeks and she was even smaller at that one. She went from 16th percentile on the growth chart to 7th percentile. So then I had to go to weekly appts at the perinatologist from 34 to 37 weeks and get ultrasounds and biophysical profiles and non-stress tests and it all got rather boring. By 36 weeks she had fallen off the growth chart and they were estimating she was 3 pounds 12 ounces (to compare, my other two children were about a pound bigger at that stage). There was talk of hospitalization, bed rest, early delivery, so on and so on. Each week I would go to the appts and watch my little girl on the ultrasound screen. She would kick and roll and wiggle around, she had the hiccups, she practiced her breathing movements, she sucked on her knee and fingers and thumb, she even peed once (we could see a full bladder, then the next thing, it was empty!) The perinatologist would come in and tell me that the placenta looked good, and there was adequate fluid and the dopplers were good and she was looking great, so then, why, I wondered, was I doing all this extra testing? And why was she so small?
I finally asked my own OB what the deal was? Why is she so small? Should I be on bedrest? Should I stop working? Can I drink protein supplements to help her? She told me what the perinatologist told her, that they still believed, as they had all along, that our baby had down syndrome and that she was just genetically made to be small and I couldn't change that (so why try, it felt like they were saying).
I cried when I got off the phone.
I had all but dropped the down syndrome thing from my mind. It all came rushing back to the surface. The same fears awakened, only now my due date was so close, the nursery was finished and her tiny clothes hung in the closet and I wondered if we would be bringing her home or if she would be staying in the NICU for weeks.
I would go to work and talk to my nurse friends there. I decided to share the whole story with them, the truth would come out eventually. They listened with sympathetic ears and reassured me that the doctors were wrong. My husband claimed the perinatologist was an idiot and declared it all a cruddy placenta at fault (I've had problems with my placentas breaking down early in the past). Everyone reminded me that we would love our baby girl, no matter what. But still in the middle of the night I worried. I wondered what would happen the day she was born. I worried as my induction date crept nearer that she would be to small to stay in the well baby nursery, that her lungs wouldn't be mature, that something else would go wrong. Maybe she wouldn't tolerate labor and I would end up with an emergency c-section.
We shared with our friends, with Jeremiah's parents, we kept the whole thing from my parents. Sorry Mom and Dad, you know now, but we knew you wouldn't sleep a wink if we told you the whole story. And I was not sleeping enough for everyone.
On Tuesday, July 26th, our daughter, Hannah Joy was born. I was induced and delivered without to much incident. Everything started out really slow, and then suddenly I was ready to push and the doctor almost didn't make it. There were a lot of people in the room. Jeremiah and my best friend, my mom and his step-mom, at least 2 L&D nurses, my OB, the neonatal nurse practitioner and a nursery nurse, there may have been more, I really don't remember. Hannah came out screaming and squirming and peed on my doctor who gently placed her on my stomach after Jeremiah cut the cord, the NNP looked her over and told me she looked perfect, and a whole new wave of tears hit me. She was screaming and pink and in no sign of respiratory distress, just tiny, and she didn't have down syndrome. Everyone in the room was crying. Jeremiah and I were so happy and so relieved, we were overjoyed at her birth, that's where we got her middle name from. My placenta was tiny, and looked old and broken down.
I wrestled with whether or not to blog about all this. So many of my friends and coworkers already know the story, but not everyone does. And how much of my own emotions and fears did I want to share with the internet? I've wrestled with my thoughts since Hannah's birth. Relieved that she doesn't have down syndrome and feeling guilty about it. Like I'd missed a bullet or something. I was worried sick about what might be while I was still pregnant. I prayed and prayed that she would be okay, whatever okay was, healthy and strong, and that God would help me to love her and comfort my aching heart. Hannah was born healthy and strong, just the way God had made her, and I love her so much. I don't love God more or less because of my youngest daughter, but the whole experience has brought me closer to my husband, and closer to God.
I could go on and on, and I probably will in the future, but it's getting late, this is getting long, and I need to feed Hannah.
Thursday, May 5, 2011
Happy Hearts
So today was my day of appointments. Really I only had two, I could have crammed more in there if I had tried, but oh well. I do need a haircut and some new glasses, maybe next week.
I started at the OBs. I am happy to say that I will never have to drink orange glucose drink again. Now, I just hope my glucose tolerance test (gtt) is normal or I will actually have to drink that nasty stuff again. I should have brought Abby's back up glucometer and checked my blood sugar at the appt, not that we do that sort of thing ;-). Baby GiGi was happy and kicked at the Dr. when she listened to her heart rate. Also, she says I'm measuring perfectly and the scale was somewhat nicer to me than I thought it would be. Pretty good OB appt. I did learn that it's not a good idea to make the appt at 11 because then I get out of there around lunch time and driving down Colfax and then Colorado Blvd. at lunch time is not fun.
Quick stop at Noodles and Company for some Macaroni and Cheese with extra cheese sauce that I then ate while sitting on the couch and watching GROWN UP TV. Ah, the joys of my kids spending the day with their Grandparents. Thanks Mom.
Next appt was the Pediatric Cardiologist. I wasn't nervous until I started to over think the appt, then I had to calm myself down with a little prayer in the car on the way there. Turns out the little talk I gave her in the shower this morning helped set my daughter in-utero straight. She was in a better (not perfect) position and the tech was able to get clearer pictures this time. The Cardiologist is saying she has a medium ventricular septal defect (VSD) and that's about it. I'm relieved. I never thought I'd be so thrilled to hear that my daughter has a hole in between the two ventricles of her heart, but given the severity of the other heart defects out there this one is almost nothing. The VSD may close on it's own either before or after delivery, or it may need surgery later on down the road, but we can take her home with us, no stop over in the NICU first (at least not for her heart). Sorry NICU RN friends, you can come out and see her in my hospital room!
It seems like so long ago that Jeremiah and I rode home feeling numb and frightened from our 20 week ultrasound. I'm glad that it is such a distant feeling. As much as I try to be an optimistic person, I find that when something scary like that comes up I turn into a pessimistic, hypochondriac, worry wart of a person. I don't want to, and I always end up scolding myself later on for letting things get out of control. God is always in control. ALWAYS. He knows what my daughter's heart looks like, He knows her name, whether there is hair on her little head and how many there are. He holds her in His hand, He holds all of us in His hand. So why do I worry? Why is my first reaction always to worry? Instead I should turn to God immediately and say, "I don't know your plan for this, but I trust in you." Period. But I'm still not perfect, still a sinner, and still working on that. Maybe someday I will be there, but I find as a mother that it's especially hard to trust immediately in God when something involves my kids. I always come around to trusting that God's plan is perfect, but I take a scenic little route first, and gas prices are to high to be wasting my fuel on the long way home.
So there you have it. A little update on Baby GiGi's tiny little heart. It isn't perfect, but it's not to bad either, and I pray someday God will live in there, hole in the wall or not.
The kids are spending the night at my parents, so I still have the house to myself. I may just have some ice cream for dinner, so there!
I started at the OBs. I am happy to say that I will never have to drink orange glucose drink again. Now, I just hope my glucose tolerance test (gtt) is normal or I will actually have to drink that nasty stuff again. I should have brought Abby's back up glucometer and checked my blood sugar at the appt, not that we do that sort of thing ;-). Baby GiGi was happy and kicked at the Dr. when she listened to her heart rate. Also, she says I'm measuring perfectly and the scale was somewhat nicer to me than I thought it would be. Pretty good OB appt. I did learn that it's not a good idea to make the appt at 11 because then I get out of there around lunch time and driving down Colfax and then Colorado Blvd. at lunch time is not fun.
Quick stop at Noodles and Company for some Macaroni and Cheese with extra cheese sauce that I then ate while sitting on the couch and watching GROWN UP TV. Ah, the joys of my kids spending the day with their Grandparents. Thanks Mom.
Next appt was the Pediatric Cardiologist. I wasn't nervous until I started to over think the appt, then I had to calm myself down with a little prayer in the car on the way there. Turns out the little talk I gave her in the shower this morning helped set my daughter in-utero straight. She was in a better (not perfect) position and the tech was able to get clearer pictures this time. The Cardiologist is saying she has a medium ventricular septal defect (VSD) and that's about it. I'm relieved. I never thought I'd be so thrilled to hear that my daughter has a hole in between the two ventricles of her heart, but given the severity of the other heart defects out there this one is almost nothing. The VSD may close on it's own either before or after delivery, or it may need surgery later on down the road, but we can take her home with us, no stop over in the NICU first (at least not for her heart). Sorry NICU RN friends, you can come out and see her in my hospital room!
It seems like so long ago that Jeremiah and I rode home feeling numb and frightened from our 20 week ultrasound. I'm glad that it is such a distant feeling. As much as I try to be an optimistic person, I find that when something scary like that comes up I turn into a pessimistic, hypochondriac, worry wart of a person. I don't want to, and I always end up scolding myself later on for letting things get out of control. God is always in control. ALWAYS. He knows what my daughter's heart looks like, He knows her name, whether there is hair on her little head and how many there are. He holds her in His hand, He holds all of us in His hand. So why do I worry? Why is my first reaction always to worry? Instead I should turn to God immediately and say, "I don't know your plan for this, but I trust in you." Period. But I'm still not perfect, still a sinner, and still working on that. Maybe someday I will be there, but I find as a mother that it's especially hard to trust immediately in God when something involves my kids. I always come around to trusting that God's plan is perfect, but I take a scenic little route first, and gas prices are to high to be wasting my fuel on the long way home.
So there you have it. A little update on Baby GiGi's tiny little heart. It isn't perfect, but it's not to bad either, and I pray someday God will live in there, hole in the wall or not.
The kids are spending the night at my parents, so I still have the house to myself. I may just have some ice cream for dinner, so there!
Tuesday, April 26, 2011
Easter
I've been trying to blog for about a week but haven't had much time to sit down and type. And now I have Easter pictures so I'm going to tell you about our Easter celebration.
We are in that stage of our lives where family pictures at holidays are hard to get. Would you believe that this was the best one out of two dozen? It doesn't help that I'm usually talking, or messing with the kids hair or outfits or trying to get them to stop fighting/fooling around.
We had Easter breakfast at my parent's house before church. I would like to say I'm still full from all the food I ate on Sunday, but sadly I'm not. In fact I woke up in the middle of the night on Sunday night/Monday morning and was hungry. The kids looked for eggs at my parents house and then we went to church, then off to Jeremiah's Dad and Step-Mom's for lunch. You want to talk about more good food. Oh, and the jello eggs. Jello eggs are a tradition in Jeremiah's family, his Mom used to make them every year and now his Dad still does. They are filling. I think I ate 3, Jeremiah ate 7. That's a lot of jello.
Unfortunately I forgot my camera for like the whole day so I had to borrow some of my Dad's pictures. The kids looked for eggs at Jer's Dad's house too, I think they went for about 5 rounds of re-hiding. I'm thrilled with this, last year Abby kept wanting me to hide eggs at our house over and over so she could find them, this year I think it's all out of her system.
Not excited about Easter at all is she?
Eli got new cars in his Easter basket. This is the only time he sat still for a picture, a picture with his cars, go figure.
Church was wonderful. I love Easter music. And this year it was super awesome, I like congregational singing when the whole auditorium rings. Abby learned about Easter in Sunday School, Awana, and preschool, so she is starting to get the Easter message. We tried to make Resurrection Cookies, but apparently I don't have the high-altitude directions so they totally flopped, but the message was still there. And the kids played with the Resurrection eggs, Abby's favorite is the donkey, but she also likes the cup from the "Last Dinner." We had a great Easter, how was yours?
Oh, by the way, here I am at 24 weeks. We did a black and white Easter because black is slimming!
Tuesday, April 5, 2011
Baby GiGi
Well folks I took a little break from blogging, the weather has been nice so we've played outside some and then Eli shared his cold with me so I've been down for the count for a few days. But I'm back! Here's what's been happening:
Last Monday Jeremiah and I had my 20 week ultrasound and found out it's a girl! The appointment started out alright, the baby, who we've nicknamed GiGi (for baby Girl Gregg) was not in the best of positions. Apparently she doesn't like being spied on in her comfy little uterine home and so the pictures they were not as clear as I remember from my other two pregnancies. The tech started at her feet and went about doing the measurements and taking picture after picture, "I'm having a hard time getting clear pictures of her heart, I'll come back to that," she said. At one point I was laying on my side trying to get the baby to move into a better spot so they could get clear pics of her heart. This is when I started to think, "hmm, somethings up." Intuitive aren't I?
To make a long story short (to late) the perinatologist was concerned because with the pictures they could get it looked like she has a ventricular septal defect (VSD). This is a hole in between the walls of the right and left ventricle. Also she couldn't get very good pictures of other parts of the heart and she referred us to a pediatric cardiologist. The appointment after that part is kind of blurry. She started talking about what defects could possibly be related to the VSD and the pics she could get and she rambled off a bunch of stuff you would think I would remember but I don't. Then she launched into isolated cardiac defect vs. part of a larger syndrome. Oh, thanks for that, because I'm not having enough trouble sleeping at night.
So we left the office a little blindsided. I limped back to the van with Jeremiah (I had banged up my right foot pretty good the night before) and sat in silence until we made it out of the parking garage, then I pulled the cardiologists card from the pocket of my purse and burst into tears. Jeremiah told me to call and make the appt and I told him I just needed to cry first.
The problem with all this is that I'm a nurse. And I have a vivid imagination and my brain likes to wander off on it's own. So I'm picturing all the things that could go wrong. My mind jumps ahead to August and I'm picturing my little girl in an isolette with a nasal canula and cardiac leads attached to her little body. Don't get me wrong, out new NICU at work is nice, and the nurses are awesome, I just don't want my kid to be one of their clients.
I called my OB on Thursday and we talked for a long time on the phone. I told her I didn't want to be a needy anxious patient, but I needed someone to talk me thru my thoughts. I love my OB, she spent forever on the phone with me and I felt so much better after talking with her. We saw the cardiologist today, my daughter is still being camera shy. They were able to get slightly better pictures, but we're going back in a month to try again for an even better view. I don't feel much different after our appt today, but I don't feel worse. We didn't get bad news, but we really didn't get good news either, we kind of got no news. Which in this case, I think no news is good news.
So now we wait. And we try to relax with this heart defect thing in the back of our minds. And I really don't feel to bad. It's weird, but I'm not to worried. In a matter of a weeks time I went from fearing that our daughter might have some syndrome and spend weeks in the NICU to something less scary. She's most likely fine, she might have some issues, but hopefully she's won't.
Limbo is an awesome place to hang out, you should all join us some time.
Really though, Jeremiah and I are calm. We're going to just wait. Wait on God and try to be at peace with that. That's a huge thing to undertake. I know there are lots of people praying for us, so that's probably where the sense of peace is coming from.
I'll post updates here and there. Check back from time to time, it may be worth your while!
Also, Abby is THRILLED to be having a little sister. Absolutely thrilled. Eli is bummed, he was hoping it was a dump truck.
Last Monday Jeremiah and I had my 20 week ultrasound and found out it's a girl! The appointment started out alright, the baby, who we've nicknamed GiGi (for baby Girl Gregg) was not in the best of positions. Apparently she doesn't like being spied on in her comfy little uterine home and so the pictures they were not as clear as I remember from my other two pregnancies. The tech started at her feet and went about doing the measurements and taking picture after picture, "I'm having a hard time getting clear pictures of her heart, I'll come back to that," she said. At one point I was laying on my side trying to get the baby to move into a better spot so they could get clear pics of her heart. This is when I started to think, "hmm, somethings up." Intuitive aren't I?
To make a long story short (to late) the perinatologist was concerned because with the pictures they could get it looked like she has a ventricular septal defect (VSD). This is a hole in between the walls of the right and left ventricle. Also she couldn't get very good pictures of other parts of the heart and she referred us to a pediatric cardiologist. The appointment after that part is kind of blurry. She started talking about what defects could possibly be related to the VSD and the pics she could get and she rambled off a bunch of stuff you would think I would remember but I don't. Then she launched into isolated cardiac defect vs. part of a larger syndrome. Oh, thanks for that, because I'm not having enough trouble sleeping at night.
So we left the office a little blindsided. I limped back to the van with Jeremiah (I had banged up my right foot pretty good the night before) and sat in silence until we made it out of the parking garage, then I pulled the cardiologists card from the pocket of my purse and burst into tears. Jeremiah told me to call and make the appt and I told him I just needed to cry first.
The problem with all this is that I'm a nurse. And I have a vivid imagination and my brain likes to wander off on it's own. So I'm picturing all the things that could go wrong. My mind jumps ahead to August and I'm picturing my little girl in an isolette with a nasal canula and cardiac leads attached to her little body. Don't get me wrong, out new NICU at work is nice, and the nurses are awesome, I just don't want my kid to be one of their clients.
I called my OB on Thursday and we talked for a long time on the phone. I told her I didn't want to be a needy anxious patient, but I needed someone to talk me thru my thoughts. I love my OB, she spent forever on the phone with me and I felt so much better after talking with her. We saw the cardiologist today, my daughter is still being camera shy. They were able to get slightly better pictures, but we're going back in a month to try again for an even better view. I don't feel much different after our appt today, but I don't feel worse. We didn't get bad news, but we really didn't get good news either, we kind of got no news. Which in this case, I think no news is good news.
So now we wait. And we try to relax with this heart defect thing in the back of our minds. And I really don't feel to bad. It's weird, but I'm not to worried. In a matter of a weeks time I went from fearing that our daughter might have some syndrome and spend weeks in the NICU to something less scary. She's most likely fine, she might have some issues, but hopefully she's won't.
Limbo is an awesome place to hang out, you should all join us some time.
Really though, Jeremiah and I are calm. We're going to just wait. Wait on God and try to be at peace with that. That's a huge thing to undertake. I know there are lots of people praying for us, so that's probably where the sense of peace is coming from.
I'll post updates here and there. Check back from time to time, it may be worth your while!
Also, Abby is THRILLED to be having a little sister. Absolutely thrilled. Eli is bummed, he was hoping it was a dump truck.
Sunday, March 13, 2011
Little test strips everywhere
So I'm cleaning out my purse the other day and among all the gum wrappers and scraps of paper in the bottom are 5 used test strips. I emptied the laundry hamper: test stip; I cleaned out the van: test strips; my pocket: test strip, kitchen floor: test strip; Abby's backpack: test strip; bottom of the trash can in the playroom: 4 used test strips! They're everywhere! And they drive me insane!
I guess when you use 6 or 7 strips a day some of them are not going to find their way into a trash can, and they can really pile up after a few days, but, come on, they're everywhere!
So this blog will be all about me ranting about diabetes.
I hate diabetes. It's stupid. Period.
Abby was diagnosed when she was 21 months old. She is now 5. There is no cure for diabetes (yet). When she was 3 years and 7 months she had been diabetic longer than she hadn't been. When she is 52 she will have lived with diabetes for 50 years. There are 1.5 grams of carbs in an ounce of milk and a 1/2 cup of blueberries is 10 grams of carbs. These are the things that run thru my head in the middle of the night and during the day. I count goldfish crackers, I weigh fruit, I measure cereal. Day in day out, I have the routines that we must stick to. I add up the carbs, I measure out the insulin, I poke my little girl in the butt. This is our life, it's mostly routine and mostly it doesn't bother me.
Most of the time.
Every so often I get into a funk. It happens around Christmas every year. I send a Christmas card to the nurse who discovered Abby's diabetes. That gets me thinking about the day she was diagnosed. What a whirlwind. Most of it is a blur, but some snippets of that day are crystal clear in my brain. I remember trying to remain calm in the car as we drove back to the Barbara Davis Center and praying that it wasn't diabetes, then ransacking my brain for what else could cause her blood sugar to be so high and praying it was diabetes instead of some form of incurable cancer or something. There are times when I just get tired of the whole diabetes thing. Checking blood sugar, keeping a log, counting carbs, drawing up insulin, it gets a little old after awhile.
But then, sometime during my self pity cycle I start to think about how lucky we are. How blessed I am to have a daughter with diabetes. Before 1921 there was no injectable insulin and my daughter would have wasted away and died before our eyes. She has one of the most well know and most researched diseases in the world. There are celebrities with diabetes and they host charity balls and fundraisers. Her teachers and school will probably have had kids like her before. It's not incurable cancer, she isn't lying in a hospital bed somewhere or confined to a wheelchair. She runs and plays and acts just like every other kid. Yesterday she went to a birthday party and ate cake with all the other kids.
Sometimes she asks me why she has diabetes. My answer is always, "because that is what God has planned for your life." It doesn't go much past that answer right now. Someday it will. As Abby gets older and starts to take more control of her disease and she has to come to terms with it she will discover why she has diabetes. When the time is right, God will reveal it to her. I would kind of like it to be cured before she has to contemplate it to much, but I'm not holding my breath.
This summer she gets an insulin pump. At least that is what we're praying for. That should make life somewhat easier. And maybe change my whole outlook on stuff. Not to mention give Abby the most expensive accessory she may ever have. Whatever happens in our future I know that God has blessed us with our beautiful little girl and He knows every second of her life, good and bad. He is in control and that makes me feel a whole lot better.
Now excuse me, I see a test strip on the desk I have to throw away.
I guess when you use 6 or 7 strips a day some of them are not going to find their way into a trash can, and they can really pile up after a few days, but, come on, they're everywhere!
So this blog will be all about me ranting about diabetes.
I hate diabetes. It's stupid. Period.
Abby was diagnosed when she was 21 months old. She is now 5. There is no cure for diabetes (yet). When she was 3 years and 7 months she had been diabetic longer than she hadn't been. When she is 52 she will have lived with diabetes for 50 years. There are 1.5 grams of carbs in an ounce of milk and a 1/2 cup of blueberries is 10 grams of carbs. These are the things that run thru my head in the middle of the night and during the day. I count goldfish crackers, I weigh fruit, I measure cereal. Day in day out, I have the routines that we must stick to. I add up the carbs, I measure out the insulin, I poke my little girl in the butt. This is our life, it's mostly routine and mostly it doesn't bother me.
Most of the time.
Every so often I get into a funk. It happens around Christmas every year. I send a Christmas card to the nurse who discovered Abby's diabetes. That gets me thinking about the day she was diagnosed. What a whirlwind. Most of it is a blur, but some snippets of that day are crystal clear in my brain. I remember trying to remain calm in the car as we drove back to the Barbara Davis Center and praying that it wasn't diabetes, then ransacking my brain for what else could cause her blood sugar to be so high and praying it was diabetes instead of some form of incurable cancer or something. There are times when I just get tired of the whole diabetes thing. Checking blood sugar, keeping a log, counting carbs, drawing up insulin, it gets a little old after awhile.
But then, sometime during my self pity cycle I start to think about how lucky we are. How blessed I am to have a daughter with diabetes. Before 1921 there was no injectable insulin and my daughter would have wasted away and died before our eyes. She has one of the most well know and most researched diseases in the world. There are celebrities with diabetes and they host charity balls and fundraisers. Her teachers and school will probably have had kids like her before. It's not incurable cancer, she isn't lying in a hospital bed somewhere or confined to a wheelchair. She runs and plays and acts just like every other kid. Yesterday she went to a birthday party and ate cake with all the other kids.
Sometimes she asks me why she has diabetes. My answer is always, "because that is what God has planned for your life." It doesn't go much past that answer right now. Someday it will. As Abby gets older and starts to take more control of her disease and she has to come to terms with it she will discover why she has diabetes. When the time is right, God will reveal it to her. I would kind of like it to be cured before she has to contemplate it to much, but I'm not holding my breath.
This summer she gets an insulin pump. At least that is what we're praying for. That should make life somewhat easier. And maybe change my whole outlook on stuff. Not to mention give Abby the most expensive accessory she may ever have. Whatever happens in our future I know that God has blessed us with our beautiful little girl and He knows every second of her life, good and bad. He is in control and that makes me feel a whole lot better.
Now excuse me, I see a test strip on the desk I have to throw away.
Monday, February 21, 2011
Carrots and Tomatoes and Zucchinis, Oh My!
As I type this my husband is outside cleaning out the yard shed. It is a lovely February afternoon and my husband and children are spending it in our backyard. It's wonderful! This is what Colorado is like. We get teased with these balmy days, you start to get excited that spring is coming, that there may actually be an end to the cold, dreary winter blahs and then you get hit, wham! with 8 inches of cold, heavy, wet spring snow on March 28th! You get used to it. We do have an amazing amount of sunshine though, so I'm not going to complain. (At least not today, since it's currently 48 degrees out, sunny and nice.)
My husband has started to plan our garden for this year. He talked about it the entire time we were eating lunch, like a kid talking about a trip to Disneyland or Christmas. "And over there we're going to have squash and cucumbers and then in those boxes we'll have beans and we'll string them up this year..." You should see the way his face lights up when he starts to talk fertilizer and manure!
I'm not going to lie, I've been thinking about the garden a lot lately too. But when I think about the garden and this summer I think in different terms than my husband. I love having a garden. There is nothing cuter than a little girl walking around with a fresh green bean or a carrot from the garden. Abby likes to eat carrots with the greens still attached, like Bugs Bunny. "I'll help you pull weeds Mommy. Is this a weed? Can I have a carrot? I'm tired, can I go play now?" Last year I gave serious thought to buying a Prairie girl style bonnet for Abby. I bought the kids buckets so they could help us collect green beans. Eli struggled to carry a zucchini 1/4 of his body weight down the hill to the house.
And the best part? It's our garden. Jeremiah made it, we planted it (last year I helped!), and then we nurtured it and watched it grow and harvested the fruits of our labor.
It's like having kids, only with faster results. And I've never been sassed by a pumpkin.
We get a little better at this every year too. Kind of like having kids. We learn from experience, make adjustments based on what works, try not to make the same mistakes (don't forget to string the peas this year), it's a work in progress. And it's tasty work. And given the right circumstances I actually like getting a little dirt under my nails.
So it may be 3 months and probably a half-dozen more snowstorms away, but I can't wait for spring and our garden. Here's what we're thinking of planting this year:
-Zucchinis (if you haven't heard, we have the BEST soil for zukes, like massive, feed a whole village zukes.)
-Cucumbers
-Squash
-Carrots
-Green beans
-Green peas
-Onions
-Corn (and then I have cornstalks to decorate with in the fall)
-Lettuce
And this year we're going to try:
-Garlic
-Potatoes
-Tomatoes (Jeremiah says if I promise to take care of them, I can have them.)
-Strawberries, blueberries or raspberries, I don't care which, I just want some berries
-And we may plant pumpkins again if there's room.
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