We had our last cardiology appointment on August 14th. We were due for an echo to see how the digoxin was helping the heart squeeze, but we just could not get Lucy to settle down. She was slightly over tired and every time it seemed she was relaxing, the minute the ultra sound probe touched her, it was complete hysterics. The tech was able to get enough pictures for Dr. Husayni to give us a three week break. Good thing about a three week break is no hospital. Bad thing about a three week break is no major changes.
Mike and I finally had a night out. We were able to celebrate a good friends marriage. It's nerve wrecking until you leave the house. Then it's almost relaxing, just to have a few hours to kick back and have fun. Thanks grandma and grandpa for letting us get out!
We are still working on taking the bottle but have not made as much progress as I would have liked. I am reluctantly realizing that Lucy may not take a bottle and will go straight to puree foods. This can happen with heart kids but I was hoping we would catch on to the bottle in hopes of getting rid of the NG tube. The feeding through the tube is actually great, it's the constant fear she will pull it out and I will need to put it back in at home by myself that's the problem. But the likelihood is we will have the tube until she can eat all her calories in puree food. We have gone up to 25 ML an hour and are going to test out bolus feeds. I spoke with Angela and she provided a schedule that will slowly allow us to test the waters. We had our first try on Wednesday and Lucy handled it well. She was unattached from the feed machine for two hours. I wanted to run around the house with her!!! It will be so amazing when she will be tube free. I'll probably cry. TYPICAL! It's a ways away, but something that we can barely wait for.
Our next change is we will be starting therapy at home. Physical therapy and speech will come to the house and work with Lucy. It's possible with their help we will get to the bottle. But we'll just have to wait and see. We started tummy time this week as well. She can make it about two minutes before getting irritated. Our goal is four minutes twice. Lucy has very good head control, we hope our PT is impressed. We are also very close to sitting. We are so proud of her progress, she is such a trouper. In reading information online about milestones we are about one to two months behind. Not bad for being sedated the first two months of your life!!!! I think by a year we will be all caught up!
We love to watch her personality develop. Her favorite thing right now is the alphabets. She could be on the verge of tears and you sing the alphabet and she is all smiles. Her least favorite thing is getting her cheek patches changed.
We are so grateful that Lucy is stable and making progress. We thank all for the continued prayers for our family. As Lucy is growing we are feeling our condo shrink and shrink. Prayers for direction on selling the condo and buying a new home would be greatly appreciated. We would love for Lucy to finally have her own room!!!!
Friday, August 29, 2014
Wednesday, August 13, 2014
Happy 6 month Birthday
Last week we seemed to see a pattern emerge: nap for one to two hours, play by herself for half hour, entertain her for hour to two hours and back to sleep. It was a nice routine and I have to say I enjoyed working at home with minimal crying throughout the day. Enter Wednesday's pediatrician appointment. We got some measurements: she is back over ten pounds after her latest hospital stay and is twenty two inches. Then we found out we got the go-ahead to start vaccinations from our cardiologist. She got two shots, one in each thigh and she did very well. She screamed her head off, but as soon as I was able to pick her up she calmed right down. Our pediatrician said she could be a little fussy for the next twenty four hours. I guess we have a different idea about what 'a little fussy' means. She was up at 3 am that night and crying which continued through Thursday day and into the night. Mike and I should have known, but instead we started to freak out a little bit. Apparently it didn't even occur to us that the vaccinations would make her this fussy. But at our cardiology appointment on Friday, both Angela and Dr. Husayni waved off the craziness and were positive it was the vaccination. We'll be ready for the next round.
The cardiology appointment was good as well. We got another x-ray to checkout her lungs. I was able to see the x-ray from her hospital discharge. The difference was night and day, all fluid was gone. We had an echo as well and she slept through most of it, although it took me about ten minutes to get her to calm and finally fall asleep. After they reviewed the echo, Dr. Husayni and Angela came into talk to us about what they saw. The squeeze of Lucy's heart has decreased a little more. As Dr. Husayni is talking to me, I am staring daggers at Angela waiting for them to say the dreaded words: 'We are going to admit her'. She catches me and says we are NOT admitting her. Phew. Instead they added a new heart medicine to help the squeeze of her heart. We a fourth medicine to add to her routine.....digoxin. A lot of HLHS kids go home on digoxin after the Norwood. This medicine can lower the heart rate and at the time of her discharge Lucy's heart rate was dipping into the 90's when she would sleep, so she was not sent home on it. We were told that the decrease in heart function can happen after the Glenn and this medicine will help. We will have another echo at our next appointment to see if this medicine is helping. The sad part is that due to adding this medicine Dr. Husayni did not want to make any other changes, so unfortunately the oxygen stays. And if I'm being realistic, we will probably be on oxygen for at least another month. Sigh.
Last but not least, Lucy is six months old today. Happy Birthday little girl.
Just a peak into her short life so far, 182 days on this earth.
118 days in the hospital
3 open heart surgeries
5 times intubated
2 catherizations
8 cardiology appointments
3 pounds at birth, now 10 pounds (tripling her weight)
16 inches at birth, now 23 inches
countless x-rays, echoes, IV's, and blood tests
and finally the biggest....we are finally out of newborn clothing and onto 0-3 month.
I wish I had kept track of how many miles we have driven, but at the beginning I surely did not anticipate our journey would take us where we are today, but we wouldn't trade any of it because Lucy is amazing.
The cardiology appointment was good as well. We got another x-ray to checkout her lungs. I was able to see the x-ray from her hospital discharge. The difference was night and day, all fluid was gone. We had an echo as well and she slept through most of it, although it took me about ten minutes to get her to calm and finally fall asleep. After they reviewed the echo, Dr. Husayni and Angela came into talk to us about what they saw. The squeeze of Lucy's heart has decreased a little more. As Dr. Husayni is talking to me, I am staring daggers at Angela waiting for them to say the dreaded words: 'We are going to admit her'. She catches me and says we are NOT admitting her. Phew. Instead they added a new heart medicine to help the squeeze of her heart. We a fourth medicine to add to her routine.....digoxin. A lot of HLHS kids go home on digoxin after the Norwood. This medicine can lower the heart rate and at the time of her discharge Lucy's heart rate was dipping into the 90's when she would sleep, so she was not sent home on it. We were told that the decrease in heart function can happen after the Glenn and this medicine will help. We will have another echo at our next appointment to see if this medicine is helping. The sad part is that due to adding this medicine Dr. Husayni did not want to make any other changes, so unfortunately the oxygen stays. And if I'm being realistic, we will probably be on oxygen for at least another month. Sigh.
Last but not least, Lucy is six months old today. Happy Birthday little girl.
Just a peak into her short life so far, 182 days on this earth.
118 days in the hospital
3 open heart surgeries
5 times intubated
2 catherizations
8 cardiology appointments
3 pounds at birth, now 10 pounds (tripling her weight)
16 inches at birth, now 23 inches
countless x-rays, echoes, IV's, and blood tests
and finally the biggest....we are finally out of newborn clothing and onto 0-3 month.
I wish I had kept track of how many miles we have driven, but at the beginning I surely did not anticipate our journey would take us where we are today, but we wouldn't trade any of it because Lucy is amazing.
Monday, August 4, 2014
Admitted
Yes, we were back in the hospital. I had a feeling all the spitting up and throwing up was most likely going to land us back there. Sure enough Thursday morning Lucy was definitely not herself. After a morning spit up, she cried hysterically and holding her in her favorite upright position wasn't helping. I stopped her feeds and my aunt was here to hold her and try to comfort her until our appointment later that day. Lucy was finally able to fall asleep and we started her feeds back, mixing breast milk with pedialite but decreasing her volume to 18 ML per hour. We wanted to keep her hydrated but not upset her stomach (her feeds are usually at 24 ML per hour). Well that didn't work because about a half hour after starting the feeds she threw up again. At this point her face was starting to look puffy as well. At about 11 am, I called the nurse and she said there is no point to wait for the appointment. So we packed up and about half hour later we were on the road.
We arrived at the hospital and they sent us for labs and an x-ray. Luckily they didn't need to place an IV to draw blood. Instead they pricked her heel and squeezed to get the blood. She didn't really like that either, but it beats an IV. We didn't even get in the back room for our echo when Dr. Husayni came out to the waiting room. I knew we weren't going home. Turns out the x-ray showed fluid around her lungs that was causing pressure. Add to it her 'new flow' pattern of blood directly to her lungs and it can bring on severe discomfort along with throwing up. Dr. Husayni said they could send us home on some extra diuretics, but being so close to surgery they preferred to observe with the hopes that the fluid would clear up on the mornings x-ray and we could be discharged. The good news is the medication was oral, so this was the first admit without being poked (I'm not counting the heal prick, that was nothing). Unfortunately Friday morning's x-ray although better was not clear enough for discharge so night number two. On the plus side, Lucy's demeanor Friday and Saturday was a complete one eighty. We saw lots of smiling, talking and playing with her rings. Saturday evening we were discharged to close out our third hospital visit in less than six months. Yikes, hard to believe she will be six months next week.
As of now we are working on getting her back to normal, then we can work on getting all that junk off her face.....hopefully in the weeks to come we can do an oxygen test. Her saturation's have been regularly in the mid to low 80's. We are sure Lucy will be oxygen free in no time! Then we will slowly start to work on bottle feeding again.
We can't thank you all enough for following our journey and praying for us. I'd like to request prayers for a family we met while we were in the hospital. Their three year old daughter has HLHS and was in the hospital due to declining heart function. The doctor's determined that medication would not be enough and she is in need of a transplant. Please pray that a heart become available for this family and for the family that decides to donate the heart!
We arrived at the hospital and they sent us for labs and an x-ray. Luckily they didn't need to place an IV to draw blood. Instead they pricked her heel and squeezed to get the blood. She didn't really like that either, but it beats an IV. We didn't even get in the back room for our echo when Dr. Husayni came out to the waiting room. I knew we weren't going home. Turns out the x-ray showed fluid around her lungs that was causing pressure. Add to it her 'new flow' pattern of blood directly to her lungs and it can bring on severe discomfort along with throwing up. Dr. Husayni said they could send us home on some extra diuretics, but being so close to surgery they preferred to observe with the hopes that the fluid would clear up on the mornings x-ray and we could be discharged. The good news is the medication was oral, so this was the first admit without being poked (I'm not counting the heal prick, that was nothing). Unfortunately Friday morning's x-ray although better was not clear enough for discharge so night number two. On the plus side, Lucy's demeanor Friday and Saturday was a complete one eighty. We saw lots of smiling, talking and playing with her rings. Saturday evening we were discharged to close out our third hospital visit in less than six months. Yikes, hard to believe she will be six months next week.
We can't thank you all enough for following our journey and praying for us. I'd like to request prayers for a family we met while we were in the hospital. Their three year old daughter has HLHS and was in the hospital due to declining heart function. The doctor's determined that medication would not be enough and she is in need of a transplant. Please pray that a heart become available for this family and for the family that decides to donate the heart!
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