Nothing of great interest to report today. We are officially staying in the hospital over the weekend. I've requested a housecleaner for the summer for mymothers day present. Kyle gaine 10 grams in the last day which puts him at 11 lbs and 8/10 oz while yesterday was only 7/10 oz. I think its time for another top ten list...
The Top Ten Signs You Have a Tiny Baby:
1. The doctor weighs him in grams
2. At 7 months he still fits in NB size pants
3. Strangers think you are telling a lie when you answer how old he is.
4. You have thought to create a Top Ten Signs You Have a Tiny Baby list.
5. He is in the negative 50th percentile on growth charts
6. You start to personally relate to the mother of Tom Thumb
7. Seriously... grams! Do you know how small a gram is? It deserves two spots.
8. Other babies his own age look like freakishly giant babies next to him.
9. You are in the hospital because of a failure to grow.
10. You feel like the lukiest Mommy ever to have the rare privilage of taking care of a baby who is newborn baby size for 7 months.
Friday, May 7, 2010
Thursday, May 6, 2010
Thursday 6 May Kyle Update with Photos
At Banner Desert, tuckered out after an exhausting trip to the ER. This is a hospital crib and yet he looks so tiny and pale.
In the ambulance... I got a couple better photos on my camera but I only have access to the photos on my phone while I'm still in the hospital.
First shot from Phoenix Children's Hospital. He looks a little bewildered.
After I put in his new NG tube. I am happy to announce he has had his mitts off for two days and hasn't pulled it out again! I like this picture because you can see one of the leads on his belly. He has two more like that on his chest. Tomorrow morning he is going to get an ECG where they are somehow going to fit 8 of these on his chest alone.
After several days on the medication and feeding tube he is feeling more like himself and has the energy and attention to play for short periods of time. When we first got to the hospital ALL he did was eat, sleep, and cry... notice not even peeing, he was retaining water so bad (hence the congested part of congested heart failure).
One of the rare photos of me and Kyle since I am usually the one behind the camera.
This is the diagram the cardiologist drew for us to explain the three defects in Kyle's heart. There are arrows that point out the holes and the direction of the flow of blood where it shouldn't be going.We met with the surgeon today. Dr. Pearl. He explained the procedure and answered all the questions we had. We are definitely scheduled for the first operation on Monday morning. The surgery itself will start around 8am but since we are here in the hospital they will come and get us around 630 or 7am. The plan is for us to stay here this weekend unless some sort of miracle happens and Kyles AHCCCS magically goes through. Kyle gained weight again this morning and topped the 11 lb mark again. He'll be having a new chest x-ray tomorrow and he will be having blood drawn for labs that they need for the surgery.
Nikolai, MaryKate, and Sara were able to visit us in the hospital this afternoon. We went downstairs to the playground they have in a courtyard and ran and climbed and played. I had so much fun with them. They made cards for me and Kyle in the play room and I have them taped up to my window.
I know that most of you are praying for Kyle and several of you have already fasted for him. I would like to ask everyone now if you would have a special fast for Kyle on Sunday, the day before his surgery.
Thank you for all of your love and support.
Wednesday, May 5, 2010
Tuesday 4 May 2010 Kyle Update
It is actually Wednesday morning but I never posted an update yesterday and most of my information is from then. I'm using this blog as information for all of our loved ones but also for a journal for me to print out when we get home. Kevin was able to come over to the hospital yesterday and stay for the entire afternoon. He brought me my laptop computer since the hospital has free WiFi so I am actually not typing on my way awesome phone so it might actually be more in depth. I did not post yesterday because it was so nice to just be with my husband for a while. My Mom came down to visit and stayed with Kyle in his room so that Kevin and I could get out of the hospital room for an hour alone. It was a really nice break for me. I had started to go a little stir crazy on Monday and it took the most of the craziness from me.
So the surgical team made a decision yesterday about Kyle. They were going to schedule him in for Thursday but another baby came in yesterday in worse shape then Kyle and they might give that spot to that baby. So they might move all their in-office patients on Friday and do his surgery then. Or if those don't work out he will be scheduled for Monday or Tuesday.But we do have the option that if his insurance comes through today or tomorrow we can choose to take him home for a long weekend and bring him back on Monday as an outpatient. When she offered that to us I didn't even think about it being Mother's Day. I actually thought that was really kind of her to think of it. But even that option has a big "IF" attached to it. So their decision was a narrowing down of a timeline but there is still no time set in stone. So, we go back to waiting.
They have been giving Kyle a continuous feed through his NG tube but we will most likely transition today to Bolus (?) feedings where he will nurse every 3 hours and while he is nursing he will be hooked up to the pump to give him more food over a half an hour or so. It is a more natural way of eating, it gets his body back used to the empty/full feelings yet still requires much less effort then complete nursing would. The cardiologist NP who talked to us yesterday told us she'd actually be surprised if he came home after the surgery with it still in place since he had such a good history of successful nursing before he came to the hospital. She said if he did it would most likely just be for a week or two. They will most likely still have him on continuous feeds at night time though.
Yesterday afternoon Kyle had the biggest poopy diaper in the history of poopy diapers. It was his first one since starting on formula and it wasn't just stinky it came out the front of his diaper and the back, soaking through his clothes and mine! Lucky for me Kevin had ran to the Gap earlier in the day to get me some new clothes since mine were all dirty and he hadn't had time to do laundry (poor me... new clothes :)Unfortunately because of this though, he lost weight again :( and this morning was down to 10lb 15oz. Definitely didn't fall back to his lowest but I was very sad to see that 11 lb mark go away. I will be interested to see though if this affects the surgeons decision on when the best time for his surgery will be.
Yesterday afternoon was an interesting one. About 15 minutes after the diaper fiasco a pigeon flew into our window! With a loud "THUMP" and a flurry of feathers it was the best laugh I'd had in a long time.
They have a library here called "The Emily Center" where I went down and checked out some books explaining his condition and surgical techniques. They also have magazines and movies and a bunch of children's books to check out.
I will do another update this afternoon if we do hear back from the surgery team. We appreciate all the thoughts and prayers from everyone. It buoys my spirit to see the support.
So the surgical team made a decision yesterday about Kyle. They were going to schedule him in for Thursday but another baby came in yesterday in worse shape then Kyle and they might give that spot to that baby. So they might move all their in-office patients on Friday and do his surgery then. Or if those don't work out he will be scheduled for Monday or Tuesday.But we do have the option that if his insurance comes through today or tomorrow we can choose to take him home for a long weekend and bring him back on Monday as an outpatient. When she offered that to us I didn't even think about it being Mother's Day. I actually thought that was really kind of her to think of it. But even that option has a big "IF" attached to it. So their decision was a narrowing down of a timeline but there is still no time set in stone. So, we go back to waiting.
They have been giving Kyle a continuous feed through his NG tube but we will most likely transition today to Bolus (?) feedings where he will nurse every 3 hours and while he is nursing he will be hooked up to the pump to give him more food over a half an hour or so. It is a more natural way of eating, it gets his body back used to the empty/full feelings yet still requires much less effort then complete nursing would. The cardiologist NP who talked to us yesterday told us she'd actually be surprised if he came home after the surgery with it still in place since he had such a good history of successful nursing before he came to the hospital. She said if he did it would most likely just be for a week or two. They will most likely still have him on continuous feeds at night time though.
Yesterday afternoon Kyle had the biggest poopy diaper in the history of poopy diapers. It was his first one since starting on formula and it wasn't just stinky it came out the front of his diaper and the back, soaking through his clothes and mine! Lucky for me Kevin had ran to the Gap earlier in the day to get me some new clothes since mine were all dirty and he hadn't had time to do laundry (poor me... new clothes :)Unfortunately because of this though, he lost weight again :( and this morning was down to 10lb 15oz. Definitely didn't fall back to his lowest but I was very sad to see that 11 lb mark go away. I will be interested to see though if this affects the surgeons decision on when the best time for his surgery will be.
Yesterday afternoon was an interesting one. About 15 minutes after the diaper fiasco a pigeon flew into our window! With a loud "THUMP" and a flurry of feathers it was the best laugh I'd had in a long time.
They have a library here called "The Emily Center" where I went down and checked out some books explaining his condition and surgical techniques. They also have magazines and movies and a bunch of children's books to check out.
I will do another update this afternoon if we do hear back from the surgery team. We appreciate all the thoughts and prayers from everyone. It buoys my spirit to see the support.
Tuesday, May 4, 2010
really quick Tuesday 4 May Kyle update
I don't have any news regarding Kyles surgery yet but wanted to quickly let everyone know that Kyle gained about 3 oz since yesterday morning! He is now officially over 11 lbs!!!!
Monday, May 3, 2010
Monday 3 May Kyle update
Good news first, Kyle gained 1.3 oz! He now weighs 10 lbs 14 oz! His medication is also working. His urine output is up and last night his respritory and pulse rates were in the low range. It actually scared me to see his numbers so low so I called the nurse in and he explained that those were normal, I had just gotten used to his high numbers.
Now for the frustrating news, at this mornings meeting they decided absolutly nothing. The main surgeon is out of town until tomorrow afternoon so when he gets in they are going to ask him. At the earliest he has an opening on Thursday so it is possible Kyle will have surgery then. If not it will then be pushed into next week. The most frustrating part is the fact that they can't send us home because they are encountering problems getting him on AHCCCS insurance. in the hospital he receives all the care he needs and even though I could do it at home they couldn't get me any of tthe supplies he needs, meaning he would resume losing weight and would become critical once more. So we are here until we can get him insurance.
All of your prayers are felt and appreciated. Thankyou for your love and support. And again I would love visitors :)
Now for the frustrating news, at this mornings meeting they decided absolutly nothing. The main surgeon is out of town until tomorrow afternoon so when he gets in they are going to ask him. At the earliest he has an opening on Thursday so it is possible Kyle will have surgery then. If not it will then be pushed into next week. The most frustrating part is the fact that they can't send us home because they are encountering problems getting him on AHCCCS insurance. in the hospital he receives all the care he needs and even though I could do it at home they couldn't get me any of tthe supplies he needs, meaning he would resume losing weight and would become critical once more. So we are here until we can get him insurance.
All of your prayers are felt and appreciated. Thankyou for your love and support. And again I would love visitors :)
Sunday, May 2, 2010
very early sunday 2 may Kyle update
The cardiologist came in this afternoon and spent about an hour with me, going over Kyle's echo results. It turns out he doesn't have just the one hole but three. His VSD is the one giving him problems and it is in the moderate to large size at 8 mm. The other two are the two parts of the heart that constitute the in-utero lung bypass system that are supposed to close soon after birth. His never did. They are both so small that if it was only that he would not require surgery. As it is the PDA is just contributing to the mess the VSD is creating. These results by themselves do not necissarily necesitate a speedy surgery date but he is also experiencing pulminary hypertension, or high blood pressure in his lungs. Left unchecked this can lead to irreversable damage to the arteries in his lungs. At mondays conferance our cardiologist will be suggesting we go to surgery within the week, two at most. If it is not scheduled for several days out we will most likely be able to take Kyle home for a few days since what they are doing for him in the hospital I can do at home. I've been taking a crash course on NG tubes. I successfully placed my first one yesterday after Kyle had pulled it out. Today I will be learning how to set up the pump and get his food rolling. He is still nursing for short periods every 2 to 3 hours but he gets so tired so quick he only lasts less then 10 minutes. I am very thankful he has the alternate feeding system so that he canget the nutrition he needs without expending so much energy.
Saturday, May 1, 2010
Saturday 1 May Kyle update
At this mornings weight check Kyle has gained an ounce! Really exciting because that means the NG tube is being effective and it makes the time consuming task of pumping well worth it. Kyle also had another echo-cardiogram today. He fell fast asleep this time so I got to actually watch the ultrasound. I was amazing to watch his heart. The technician also took time to play a part in slow motion so I could see the hole. It hasn't been reviewed yet, we still have to wait for Monday. I also got to start learning about his NG tube. I learned how to check to make sure it is placed correctly and a little about the workings of the pump. Otherwise its been a very long and boring day. I would love any visitors is you are able to make the drive. He is also getting his IV port taken out since we are not using it and since it no longer will flush.
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