April 17th

Brenan's bili level went up today. I was told he could come home today if his levels were under 17. His level was 16.4 (that is cutting it close). They are starting the discharge process. There is tons of paperwork and pass offs to do. We should be able to leave around 3pm. He will have to be on bili lights at home but that is okay. We are so excited to bring our baby home today!!!!!!!!!!!!!!

April 16th

I have been told several different things regarding feeding for Brenan. His nurse this morning said that it would be Tuesday at the soonest for him to go home. He would have to do 4 feedings a day then 12 hr feeding then 24 hour feeding. The nurse tonight called the doctor to get me an answer they are going to let me feed him during the night and see how he does so if all goes well which he has been doing great with his feedings then there is a possibility that he will get to come home this weekend. Lets keep our fingers crossed.

April 16th

Brenan is more alert everyday. He has started opening his eyes. He is such a curious little boy. He likes to look around to see what is going on. They have ordered 3 feedings today. They may pull out his PICC line today and then we can start the weighing/feeding process. I am told this could take 3-4 days depending on how well he feeds and digests the food. He has been doing well but I am hoping when they stop the TPN (IV fluids) and lipids (which they have stopped the lipids this morning) that he will take off. Once they remove the PICC line there is a good possibility that they will move him to the nursery. They are overcrowded here so they have babies everywhere so they are not really sure where he would end up if they moved him. It is so good to be able to hold him and not have a time limit. He is so relaxed and at peace when we hold him. His bili levels also came down slightly being off of lights so hopefully we are done with those also.

I am definatley getting worn out. It is very hard to spend time with my kids and be at the hospital. I really appreciate all of you that have been helping with my kids and making them feel special. It has been nice not to have to worry about them. So THANKS to all of you for your help and concern. We are definately on the upside of this and we hope that we will be home soon and our family will be complete.

April 15th

Today I get to try two feedings, which means I also get to hold him. He is doing really great. He has no more machines to help him breathe. He is doing it all on his own and doing great. His nose is still swollen from the machines and his eyes are still bruising but every day he is started to look less bruised and battered. The doctor evaluated him in the afternoon and has determined that he can be off of phototherapy (lights) and can stop the IV antibiotics as the infection has cleared up. They have pulled the IV from his arm but he still as PICC line and gets tube feedings. He is such a brave little boy and he is doing great!

April 14th

Brenan is still off of CPAP. He is doing well. He did really well on his first feeding today. His bili levels have come down but he still needs lights.

Dad finally gets to hold Brenan.


They had to place his PICC line in his head. This is where he gets all of his fluids.

Here he is on his ventalator.


Getting ready for the trip to UVRMC NICU. This was a long process. It took about 2 hours for them to get everything ready for the transfer.



He was very bruised and swollen. This just proves to me that he is a fighter.
(The swelling and bruising is going down every day)



On CPAP


Right after he was born

April 14th

When Ryan was down at hospital this morning Brenan was off of his CPAP. They will monitor him throughout the morning to determine if he can stay off of the machine. We will keep our fingers crossed. This would be a huge step in the right direction if he can do his breathing on his own. His bili levels did come down slightly but he still has to be under lights. He continues to get IV fluids and antibiotics but he is also getting tube fed every 3 hours.

April 13th

Sometime during the night Brenan decided he did not want his ventalator so he pulled out the tube. He did real well off of the machine for a few hours but then he started to have a little struggle breathing. They put him back on the CPAP. His bili levels had also gone up (Jaundice) so they now have him on 2 bili lights vs the one he was on yesterday. Everyday we see him you see a improvement. We were also able to hold him today. We each got to hold him for 20 mins but he was so at peace when we were holding him. It is a little bit of a challenge to just hold him and not rock and cuddle him but with all of the wires, tubes that is all we can do. I did not want to give him up to put back in his bed. Later that night when we got there and I was talking to him he started to cry. It was such a good sound. We have not been able to hear any sounds since birth due to the tubes in his throat. It also is hard to hear him cry because there is nothing you can do for him.

Update

April 12th 1:50pm. I have been at the hospital most of today. Brenan is doing well. The neonatolgist feels that he has congenital pneumonia. He will need to be on antibiotics for at least 7 days. He has already been on them for 3 days and are hoping that by day 7 he is completely clear so he can come home, but it is a day to day process. They are putting a PIC line in today so it is a easier process to administer the antibiotics. The fluid is started to come up clear but he still has quite a bunch of fluid they are getting out of his lungs. He is doing great on the ventalator but due to the pneumonia they do not want to take that off yet. We can not wait until they take that off. We both have had one short time that we were able to hold Brenan. I know that as soon as we can hold him he will thrive. He responds to my voice and touch. He did get his first tube feeding today and will continue to gets those every 3 hours. When he is off of the ventalator then we can try to get him eating what he needs to. We are hoping that he catches on to this process quickly so he can come home when he is off of antibiotics.

Many of you have wondering how we are doing. We are doing as well as expected. It has been difficult for me. I am very emotional. It is hard juggling trying to heal, give my other children the attention they need, and being here for our little boy. Kinley has been having a hard time but she does not let me see how this is affecting her. She is being a brave girl. She understands what is going on but I do not think she fully understands. Daven is ready for his mom to be back home with him. We are doing what we need to do but it is tough. I have defiantly learned patience again and I do not take the little things in life for granted. We appreciate everyones concerns.

Update

Brenan is doing as well as expected. He is doing good on his ventalator. You can tell he is more relaxed and not in pain. I was able to give him a spongebath tonight. They have not been able to go down any on the ventaltor as we was hoping they would be able to do tonight. He was weighed tonight during his bath 7lbs 13oz.

Our precious little boy!

Brenan was born on April 9th at 9:21pm.He weighed 8lbs 0 oz, 19.5".It was a very easy delivery but he was having trouble breathing. They took him to the NICU. There they put him on a CPAP machine (.Continuous positive airway pressure therapy.CPAP machine increases air pressure in your throat so that your airway does not collapse when you breathe in) They could not find a BP so they then tried to get a IV going to try to get some fluid in him. They tried every possible spot to do a IV but could not find a vein. They were down to one of there last options and were successful. Friday night they did an CXR and determined he needed Serfactin as the CXR was hazy with usually means his lungs were not fully developed which they state happens to about 5% of full term babies. They then had to intubate him and gave him artifical Serfactin( not sure if this is spelled correctly) directly in his lungs. He was on CPAP for about 18 hours and they tried him off of CPAP. He was still having a difficult time breathing. His respirations were to high and he was retracting with each breath. So they had to put him back on the CPAP. He was really fighting it and you could see how he was struggling to breath, grunting with each breath. They intubated him again and tried another course of Serfactin. This showed no improvement so they transferred by lifeflight team via ambulance to UVRMC around 12:30. They put him on a ventolater so he did not have to fight his breathing. Ryan was with him most of the night. He says that he was looking much better and he was very peacful not having to fight to breath anymore. I will post more information this afternoon. Please put Brenan in your prayers.