Terrible, Horrible, No Good, Very Bad Day

The only way to describe today was it sucked. (Sorry if you are offended by that word but it is my blog and my feelings and that is the only way I can describe it nicely!)

The past few days at the hospital we thought we are able to see the end in sight. Lincoln was able to eat and was getting better each day. He sounded kind of congested but the nurses thought it was just his reflexes getting used to eating. But today we found out the reason for congested sounds, but I should start from the beginning to reveal all the reasons why today was no fun.

We have been pretty frustrated with the nursing staff in the NICU being inconsistent with many aspects of Lincoln's care. We were getting various opinions and ways of feeding Lincoln that were "best for me". We were tired of being talked down to by a few nurses, changes in Lincoln's meds and such, and just general dissatisfaction of the whole thing. Don't get me wrong we have had some amazing nurses that we miss and are sad to see them working with other babies but the last few days we have been unhappy. Yesterday they made the decision to put Lincoln back on nutrition through his IV in his leg because he was losing weight (5 oz....I though a little weight loss was normal but guess I am not a nurse) which frustrated us because we knew it would set him back a few days. They also decided to reschedule another swallow test because they were afraid were the congested sound was coming from. We were fine with the swallow test being redone but we figured it come out great and then we could go home!

The surgeon came back and looked at Lincoln and decided that his job was done with Lincoln. The surgery sight was healing and looked great so he was passing Lincoln off to the OT (occupational therapist) because now it was all about feedings. That was good news to us because we thought Lincoln was getting stronger at eating each day. My MIL was up at the hospital with us and she knew our frustrations with the nursing staff so she let our concerns be heard. She complained to the Nurse Practitioner (pretty close to the top of chain of command in the NICU and one person we are a little annoyed with) about the inconsistency of the nursing staff and the complaints we had about the noise level in his pod because he wasn't getting any sleep. I knew if I complained then I would just cry so it was great that she did it and not me! Just as we finished complaining Shane was coming into the hospital and caught the surgeon at the elevator and voiced our complaints again...so they heard them twice. Once the surgeon heard the complaining we saw some changes! We were moved to a quieter part of the pod and the nurses were much kinder and left of alone pretty much the rest of the day. I guess we were heard.

Now for the really "sucky" part. Lincoln had a swallow test at 3:00. At his last swallow test on Wednesday, the OT and speech pathologist were absent so he was not assessed properly (again another frustration) so today they were in the test with us. The agenda for today's test was to try different consistencies of the milk (using the Simply Thick which we have been using the last few days of feedings) and try different levels of nipples (he has been on the level 1 which is the slowest flow so he was having to work hard to suck). We started out with just breastmilk using a level 1 then changed the consistency of the milk or the nipple. We watched were the dye (also in the bottle) went and that determined what to use next. Each time we tried the test Lincoln was aspirating into his nasal cavities. The speech path said she had never seen this much with a baby or with an adult and she was shocked that none was coming out of his nose! Lincoln would sneezed a few times after he ate but we figured it was something silly he did and we were not concerned about it. She said that this could cause major issues in the future from infection to eventually causing major damage. As he was aspirating into his nasal area, it would sit there until he was done then go down either into his lungs or to his esophagus. They were not too concerned with the aspirating straight to his lungs because it was very little and they believe he will soon outgrow it as he heals. The speech path feels that Lincoln is still healing and he is guarding his esophagus since it is probably still sore from surgery and that he will correct what he is doing. The only way to "fix" the problem is to reinsert a feeding tube and let his esophagus have more time to heal without losing any more weight. This was heartbreaking to hear. I held it all together until we were back in his pod then I lost it. The NICU doctor came and talked with us and said that the radiology doctor will have to reinsert the tube because he will be able to do it without hurting the surgery sight. He will not be back until tomorrow morning so we have to wait until then to do anything. Lincoln will probably be cranky tonight from being hungry so I am a little relieved to not be there and hear him suffer. We will have another swallow test on Monday and see what he is doing then. If he is swallowing correctly then we can take him home in a couple of days after that if not then we have to just wait until it is corrected. There is no surgery to fix this problem so it is just up to Lincoln! After talking with my aunt, Amy she told me that there are oral stimulation exercises to do with Lincoln so he will not "forget" how to eat. I am hoping to start these tomorrow with the OT. So now we are playing a waiting game until next Monday when the swallow test is redone.

This has been a very emotional draining day. We went from pure frustration to upset and heartbroken in a few hours. Tonight driving home was almost as hard as leaving him the first day we were discharged. I have so many emotions right now from heartbroken to seeing my baby in the hospital, guilty for leaving him in a hospital alone for night, frustrated with feeling like I need permission to do anything with my baby, jealous when I see a baby getting discharged, upset that we are dealing with this, angry that I went through all the mess of being pregnant and csection and not getting to enjoy a baby at home, and so much more. I know we are blessed to only have the issues we have because there are so many other major issues that he could have but it is hard to see the good in this. Shane and I are going to get through this together but we hit a bump in the road and are dealing with it. My prayer tonight is for Lincoln to heal this week and pass his swallow test next Monday and for Shane and I to have the strength to get through this.

So today has been no fun but I am looking forward to seeing Lincoln tomorrow because that boy sure has a great personality! :)

Until next time,
Carrie