Doctor's Visit

I took Bryson to Dr. F, our pediatrician, yesterday and we did not get the news we were hoping for. Bryson had lost an ounce in a week. We are going to give Bryson a bottle with my milk in it and the added calories at every feeding instead of me nursing him every other time. I wish I could nurse him every feeding, but right now, this is what he needs, the extra calories. We will go back on Friday to see if he has gained. Please pray Bryson puts on a few extra ounces between now and Friday.

Dr. F also took some blood the check for kidney function, electrolytes, iron, potassium, etc. and the results were good. We thank God for answering our prayers and we pray he continues to hear us.

I have been sticking to giving him a bottle, every 3 hours on the dot, and he has been pretty good at finishing those bottles. Sometimes he gets lazy and wants to sleep instead of drink, which is normal for any newborn, but Bryson HAS to stay awake. It is crucial. Sometimes we have to change a diaper, unbundle him, or undress him to get him to stay awake, whatever it takes. :)

Last night, instead of letting Bryson sleep through the night, only waking up once like he has been, I sat my alarm to wake me every 3 hours to give him a bottle. Maybe this will help him put on some weight. It's so hard to wake a sleeping baby at 3 in the morning!

Please pray for good news when we go back for a weight check on Friday. We still need those prayers.

Beautiful Day

What a beautiful day it has been! I stayed home with Bryson this morning while Greg and the girls went to church. We aren't quite ready to get him out around crowds yet. The dr. said B's immune system shouldn't be any weaker than any other newborn, but we just want to stay on the safe side. :)

Bryson is doing well. The only problem we've had is that he has made it a habit to throw up once a day for the past 5 days. It wouln't worry me so much if his gaining weight wasn't crucial. Other than that, he has been the best baby! He's so content.

He has been waking up only once at night, but I have tried to be good and wake him up at least one other time to eat. It's so hard to wake a sleeping baby! :) He is by far the best sleeper of my three babies. He has been awake almost the whole day with only a couple of cat naps. (One while his big sister Chaney held him). She is definitely a little momma, she begs to hold him.

We will go back to our pediatrician on Tuesday to make sure B is gaining weight. We pray for a good report. Please continue to pray for Bryson for many days to come.

Home Sweet Home

Sorry about slacking on updating the blog. I tried updating the day we left the hospital from my phone but obviously I was unsuccessful. I didn't mean to leave you hanging but we have been really busy since returning home.

Bryson was discharged from Childrens Monday night at about 5:00p.m. and we got home about 9:30p.m. There was TONS of traffic because of a wreck near Conway and it was already a busy time of day. We sat in traffic for nearly an hour, barely moving. I was very inpatient because I was so ready to get home.

Monday morning, the doctor on duty, Dr. Dyamenhalli, came to our room and said he wanted some blood tests done and chest x-ray before he would release him. Mom had already carried pretty much everything down to the car, Greg had already come home to return to work. The blood tests would show his kidney function, electrolytes, and check bili level.

The bili level had continue to drop and kidneys looked good. The x-ray showed no change from the x-ray over a week ago. Lungs were still a little cloudy, but not any worse.

We were set up to see our pediatrician here at home Tuesday for a weight check and for Dr. Froman to assess his breathing. She said he looked great! He weighed 8lb. 6oz. We will continue to see her weekly for weight. Bryson will have a harder time gaining weight than a healthy newborn because of his heart working harder and burning more calories.

We will go back down to Little Rock on May 7th to see our cardiologist for a follow up. We will then find out how often we will make the trip down to Childrens.

Thanks to everyone for their continued support and please continue to pray for Bryson's strength.

Go

The H word

We talked to Dr. Fontanot today, Bryson is still doing well and all we are waiting for is for him to take all feedings orally and gain weight. HOME is in the near future! He is still breathing a little bit hard because of the holes in his heart. Dr. F said by the high pitch sound he heard when listening to Bryson's chest, the VSDs are closing. They also turned Bryson's flow on the oxygen down to 1 and it is still providing 21% air (atmospheric air). The air is just giving him a little boost, he is doing the work on his own.
Our doctor is off as of tomorrow and we will miss him. He is a very laid back, very knowledgeable man, that makes you feel good everytime you talk to him.
Please continue to pray for Bryson to make steady progress. God hears our prayers and we can all see that he is answering those prayers. Thanks again for all the support from our family, friends, and even strangers, we are so blest. Please know we do not take you for granted, we thank the Lord for you daily.
p.s. My battery died in my camera, but I will try and upload some pics from my phone soon.

Good Night

B had a good night last night. He is still retracting a little with his breathing, but it is better than yesterday. He will probably just coast today and might see a slight drop in the air flow to his cannula. He has also done well with his bottle feedings. We are working towards getting that feeding tube out!

Dr. F update

Since we last posted, a few changes have been made. They decided to put Bryson back on room air just blowing in his nose. His stats have been great, he has just been retracting a bit when he breathes. They believe it is just him trying to transition to do ALL the work on his own. But we still have been getting good news. Vitals have always been good, he's doing good on tolerating his feedings.

More progress

They started stepping down B's oxygen support yesterday and weaned him off around 6:30 pm. He has had a few episodes of fast, hard breathing, but all in all he is doing well without it. The doctors want him to get used to doing the work on his own. The next step will be feeding. He might get to try a bottle today instead of his tube.

A little more news

We talked with the doctors and they are really positive about B's progress. He has finally seen a decrease in his direct bilirubin along with the indirect. This was the only reason for talking about another abdominal ultrasound. Now we are just tracking the tests to see if it will continue to drop over the next few days. His oxygen is down to 21% which is actually atmospheric air. They will monitor his gases and pulse ox to see if we can get off of the help. They don't want to do it to fast since he failed one time prior when it was removed. They are removing one of the tubes into his stomach right now and will pull the other back a little to start feeding him into his stomach every few hours. This is just a step to get him off continuous feed and more on schedule like he will be on once everything is removed. Hooray!!!!

Terrific Tuesday

Bryson slept pretty well last night, that's more than we can say for us. That's ok, we were just so excited to get to stay with him. The Dr. came by, reduced Bryson's oxygen, and said they would slowly start grouping his feeds together until we reach every 3 hours. Then hopefully we can get on a feeding schedule and I can start nursing again. These past couple of days have really been great. We know God has been watching over Bryson and strengthening him. We pray God continues to answer our prayers and we will be home before you know it.

We Moved!

Wow! What an eventful day for B. He started out getting some wires and lines removed. We thought that was such a great start, but it got even better when we moved into CVICU East this evening. B has his own room now with a big boy bed. We are rooming in with him now and are responsible for most of his care. The nurses still monitor him and give him his meds, but we are changing diapers, holding him, and learning what we need to know about his care. He will now work on getting weaned off oxygen and removal of his feeding line. God is truly answering prayers for all things concerning little B.

More pictures

Another good day for mom and B!!!



Dad gets a minute to hold B while mom paces and wants him back!!!

Who says Mondays are Bad?

B had a good night off of the vent!!!!!! They changed a few orders for him today. He is only getting vitals taken every 3 hours now instead of every hour, and they will remove one of his PICC lines along with a fluid line soon. His potassium levels were a little low, so he will get supplements added to his milk. All in all, he is making good progress and we thank everyone for all the prayers! Going to go hold him!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Pictures

That's right, I make these wires look good!



Easy dad! I still have wires, hoses, and monitors attached to everything on my body.





Mom gets to hold bro first!!!!!!

Sorry so late

We are sorry for posting so late today. B has had a wonderful day! He came off the vent around 1:45 pm today and has done well without it. He looks so much better with the tube out and off his face. He still has some oxygen coming in through a nasal tube and a feeding tube in his nose. We'll take it! Mom got to hold him for the first time since March 23rd. Dad is still waiting as we speak. We will try and post some pictures tonight.

Saturday Report

B is doing good. His x-ray showed a better much clearer lung picture today after a cloudy one yesterday. They expect that he is still adjusting to a closed pda and the fluid should stop building up, we hope. He will have extra nutrition added to his milk so he can gain some weight. They figure the extra calories will make him gain what he needs since he only weighed 9 lbs today. His billirubin counts were lower today, hooray!
The girls are here again, so we spent most of the day with them. We found Easter eggs, blew bubbles, took naps, and have had a good day.

Shoot!

We were a little bit disappointed this morning when we got to B's bedside. We had hopes of holding him for the first time in two and a half weeks. They told us last night that he might get his vent out this morning, but his x-ray told a different story. There is some cloudiness to his lungs which is fluid that needs to be excreted out. They will keep him on the vent and turn up the setting that makes his lungs really open up along with an increase in his diuretic medication. We'll keep waiting and hopefully get to hold him soon!

Pix from yesterday

His own room!

His little scar...healing great!
Look at those long toes! He's gonna be tall like Daddy!

A long wait

I guess its good to be one of the last babies on the list for the doctors rounds. The information for today is looking good. His echo was ok and his abdominal ultrasound was good too. The organs looked good, but he did have some "sludge" in his gall bladder. They said not to be alarmed because he has just now started on food and several days of full feed will help this go away. He should be on full feed by noon tomorrow! The vent settings keep going down and he seems to be doing well with this slow step down. We're praying the holes in his heart don't cause him any serious problems right now. It would be wonderful to get them fixed when he gets bigger!
He opened his eyes today and reached out and held my finger. Everyone was glad he didn't pull it!

evening update

There's not much to report tonight. B is doing well and has had a good day. They are working on turning the vent down and he is about to go to 6 mLs of milk. We will wait and see what tonight holds and hope he can wean off the vent soon. There's not really anything significant to report from the echo this morning.

24 hours after surgery

B had a good night last night. They said it was uneventful and he just snoozed. He is currently getting another echo and will update on that when we know something. They started him on 2 mLs of milk late yesterday evening to see if he can handle it and are planning on 4 mLs. He will get an abdominal ultrasound today so he will be off food from 10-2. He needs to get his intestines, kidneys, and liver going to help get rid of everything that he needs out. They lost his arterial line this morning and might be replacing it sometime soon. This is the easier way for them to pull blood and check blood pressure, so we guess they will put it back.

Post-Op

Praise the Lord! Bryson came through his surgery very well. He had one episode of a rapid heart beat, but his blood pressure was all right and they actually waited and finished his surgery before they fixed the heartbeat. He's recovering in the CVICU now and is looking good. He's come a long way and we pray that this will be what he needs to start getting better. The question of fixing the large hole between the upper chambers of his heart will depend on him. The ideal situation is to fix it a little later in life when he is stronger, but it is possible that he will need it fixed now. Only B can tell us that.
We are so thankful and appreciative of everyone's support. This tremendous outpouring of support has truly pulled us through these trying times. Words can't express how much it means to us and little B! We enjoy the comments and e-mails that everyone sends, so please keep it up. It's very obvious that God answers prayers.

A hard thing to do

We have given B a kiss and watched them wheel him off to the OR. They came down to get him about 6:55 am and it was a few minutes passed 7 when we made our way to the elevator. We were able to walk with him all the way to the doors of the OR. The nurse will give us updates every hour on B's progress and how things are looking.

Change of plans

After meeting with the surgeons they have now decided to go in through B's back through his ribs and close the PDA valve that way rather then opening him up. This will be less invasive but still very risky with so many nerves around the heart, etc. Please continue to pray for B.

Monday Update

We just met with all the doctors except the surgeon. Bryson will have surgery tomorrow morning to close the pda valve. The surgery is scheduled first thing and should take several hours. He will need another surgery later on to close the large hole in the upper chambers of his heart, so they will make an incision on his chest to reuse for his later surgery. The other surgery will probably take place when he is around 2. It will all depend on him and how he handles everything. We are looking at a long road ahead to getting better. The possibility of having to stay here for another 3 weeks is looking very likely. He is having some difficulty with his billirubin levels and will have to start some medication to help him get rid of it. We are hoping that he will be able to start eating soon and this should help him get his levels down.
Please continue to pray for B and those who are taking care of him.

Sunday update

Well, not much to report today. We are waiting for the heart echo tomorrow to give us an idea about what will happen. We are fairly certain that B will have to have surgery, but don't know the extent of it yet. They've told us that the pda will most likely have to be closed and they could possibly close the hole in the top of his heart too. That should all be decided tomorrow. Today he is just hanging out under the tanning light. They did go down a little on his vent today, which is good.

Saturday Update

Bryson just isn't ready to come off the vent yet. The doctors took him off last night about 10:00 PM, but he started to breathe fast and his blood gases were not looking as good. They tried to give him oxygen through his nose, but he needed the ventilator to get everything back under control. So, he was back on the vent about 3 am. He is also back under the light this morning. He still looks good and we are hopeful that he will be ready to handle everything on his own soon.
On another note, our girls are here today and we are planning to spend most of the day away from the hospital and playing with them. They are in good spirits this morning and ready to be turned out on Little Rock!

Friday Evening Update

Bryson is doing well at this point. He's made some good improvements as far as his ventilator is concerned. He's off the gas and is down to almost nothing on his oxygen requirements. The doctor is talking about taking him off sometime tonight to see if he can handle it on his own.
The echo results were not as good as we had hoped for with the pda valve still being open. So, we are in the waiting mode again until Monday when the next echo will take place. The doctors are trying to give him every opportunity to close it on his own. Surgery will be the next step for B if the pda remains open. He will have to go back on the ventilator if he has to have surgery, but they want to give him a few days off of if he doesn't need it. We remain optimistic that things will continue to improve and hope that everyone keeps the prayers going.

2 weeks old

I can't believe Bryson is 2 weeks old today! Sometimes it seems as though I just had him yesterday and at other times, I feel we have been at Children's for years.

Bryson was still under the lights when we came to see him first thing this morning but they will probably be turning those off soon. His billuirubin is down to 10 from 17 yesterday! His nurse, Michelle, said it was because she exposed his little booty to the lights yesterday!

They will do another heart echo today and see if any of the pressure has relieved. We are praying for more good news today. The Lord has really taken care of Bryson and we believe He will carry him through. Thank you for all the continued support, we are forever grateful.

Progress

Bryson's Billirubin numbers have not come down enough for them to take the lights off him so he is still sun-bathing. The Dr. has lowered his nitric gas down to 2 from about 20 yesterday!! We are hoping you will be completely off of the nitric tomorrow!! His oxygen level is down to 37, when they are able to take the oxygen level down to 21, they will remove the respirator.
They will do another echo in the morning so keep praying the pressures have improved. We will not know the results of that test until probably tomorrow afternoon. Thanks again for all the cards, gifts, visits and prayers, we are so blessed to have so many that care.

Good news

The heart echo results looked better today!! Thank you for all the prayers! Please keep it up! The pressures in his heart and lungs looked better!! His PDA valve was still open but classified as a moderate opening instead of a large opening like it was on Monday.

They are going to wean him off of his nitric by Friday. Right now it is at a 5. You have to slowly wean from 5 to none whereas they dropped it from 20 to 5 overnight.

They will do another heart echo on Friday and decide if they need to go in and close the PDA. If they have to go in and close the PDA, the cardiac surgeons will come to the bedside and it will only take about 30 minutes from start to finish!! Fairly simple procedure.

Thank you again for all the visits, cards, gifts and especially all the prayers. Please keep praying! We love you all!

Getting a tan

We came in this morning and they had decided to put Bryson under the UV lights. They have been monitoring his billirubin count because he has continued to be jaundice. They have never really been concerned but now this will be one less thing on his plate.

They have not yet come by to do his echo. Oh we are praying sooo hard for some good news. We pray the pressures have come down in his lungs. The neonatologist had met with the cardiologists yesterday about his open PDA valve in his heart. Some thought the PDA might be helping his condition and some thought it might be hurting. They came up with a plan, to come way down on his nitric gas to 5 and then do the echo, hoping this will help them see which is the case. Please continue to lift Bryson up in prayer.