1 Month 1 Week

Baker did really well today. They gradually lowered his ventilator settings all day, and he tolerated it fine. Here are more pictures to tell the story of our visit. Oh yeah and thanks to Baker's wonderful nurse we got our first family portrait!!!

Milestones and Pictures

Baker reached a new milestone today. He is now completely off the IV nutrition and lipids and is getting 100% of his nutrition from fortified breast milk. He now eats 20ml's every 3 hours. It was such a joy walking in this evening and seeing no IV pumps connected to my boy for the first time since he was born. I now leave you with pictures…

Two Steps Forward, One Step Back

This seemed to be the theme for the day yesterday. Baker had another good morning. He's been doing super well with his feedings. He wasn't having any majorly bad O2 desaturations. So during his hands on while we were there they had to suction out his breathing tube. During the suction his O2 and heart rate dropped seriously low, they had to use the oxygen bag on him to bring him back. We saw him change colors for the first time (or lose color really), and it scared the heck out of the both of us. It seemed to take him a good hour to recover. Once he seemed to be doing o.k. we came home for our afternoon break.

We got back to the Nicu a little late and all of his ventilator settings were pushed up. His breathing rate (breaths per minute) was bumped up 30% and his pressures were bumped up about the same percentage and he wasn't doing as well as he was since he got his new tube. Now I'm not sure what all the settings do I just know that when they are going down he's on less support and when they are going up he is on more support. We also had a new nurse that was paying attention to a different baby when we walked in, and didn't offer a status update as soon as we walked in (which usually is the norm). He had a respiratory therapist working on him when we walked in as well. I asked the respiratory therapist, why his settings were bumped up so much. He said well you know we did some tests and we raised the pressures, you know with these babies it's Two Steps Forward, One Step Back. (I hate it when they give us non answers followed by the cliché of the day.) Obviously the RT didn't know who he was talking to because that wasn't a good enough answer. So I asked specific questions about his blood gas and he started answering questions. His CO2 was really high which isn't good. So when we finally talked to the nurse, again she didn't offer an update which always is a bad sign and didn't make us feel easy at all about his night. So I had to ask the probing questions, like when did they decide to turn up his support – how's his feedings etc. We got our answers.

Baker got about 2 and a half hours of kangaroo care and he loved it. He opens his eyes for longer and more often when he's on mom's chest, as if to say I'm safe; I can look now!!! I could have been imagining it but it seemed like he's starting to track things with his eyes. They still wander around, but he's looking straight ahead more often and it's so great. He is so beautiful.

Moving Up

What a day we had yesterday. When Teresa held Baker a few days back we noticed a noise coming from his mouth. It was kind of like a squeaking rattling noise. The nurse at the time explained that it was an air leak, nothing to worry about here. Mom worried about this and so we asked the doctor about it yesterday. She said yes the tube is too small, but since we are weaning him off of the ventilator we don't want to change it up and risk irritating him any more. Now we didn't correlate this until last night, but his stats have been going crazy (I mentioned this in an earlier post) since we noticed the leak, and the common theory posed by the doctors and the nurses is that because they were weaning him off of the vent. His feedings have been weird as well; he has been digesting just enough food to not alert the nurses of a problem.

Flash forward to yesterday morning… We get to the hospital and he is not looking happy at all. His O2 saturations were falling lower then we ever saw and more often. The nurse had to keep adjusting his O2. He still is only digesting just enough food to not alert the doctor. We stayed most of the day with him. When we went home, Baker said enough with this annoying rattling breathing tube and he pulled it out and waived it in the air for the nurse. They used the next size breathing tube and guess what … he stabilized. His stats since they put the tube back never dipped as low as they were before, and they weren't dipping as often. And low and behold he started digesting most to all of his feedings.

The body is such a miraculous thing, even such a small body. It was explained to me that when the body is low on Oxygen, it sends it to the areas that need it the most – the brain and the heart. At the same time it slows down the less important systems like the digestive system. This seems to be what was happening to the little guy the last few days.

He now ways 2 lbs. 9 oz and is looking great.

Slow Progress and Cautious Optimism

I sometimes get so frustrated by these buzzwords or doctorspeak. This is just what we have to deal with as parents of such a young preemie. It's Tuesday again, so we got the Monday cranial ultrasound results. What we heard were the words highlighted in this post – slow progress and cautious optimism. The great news is that there is progress from last Monday's ultrasound to yesterday's; some resolution of the clots from the brain bleed and again no marked swelling or hydrocephalous. It takes time for these things to resolve, and longer time to see what kind of impact they will have on our son's future. Mom and I braced for the worst and got a glimmer of goodness, so today is better then last Tuesday. So we will take slow progress and cautious optimism over last week's update; which was no change.

I also read our preemie book, which I'm going to plug right now because it's been a wealth of very good information for us and I recommend for any parent that may wind up in a similar circumstance. The book is called The Essential Guide for Parents of Premature Babies by Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doran, M.D. Other then the brain bleed we were also worried about the little guys respiratory progress. It seems every time they try to wean him off the ventilator he does good for awhile but then falls back and needs more oxygen. Well the book explains that this is really common, since their really isn't any true non-invasive test to see how well a baby respiratory system is that the only way to see how they will do is to lower their settings and monitor. I also read that even though his oxygen settings have been higher lately, they still aren't even considered high compared to other premature babies.

Finally he is still tolerating his feeds pretty well. Sometimes he hasn't digested all of the milk, but overall he's getting it all down. I think Baker has his own time schedule and even though he's been eager to get out of the hospital, he's going to eat on his schedule not the doctor's… J I'm afraid he may have inherited the stubbornness that seems to run in my family. He's got his way, and that IS the way for him despite what the doctors think…

Still Going…

When we walked in today he was having a fit. He had a wet diaper they changed it, and changed his position and he finally calmed down. We noticed lately he's been breathing harder, and that worried us until we talked to the doctor this morning. Apparently, the more they wean him off of the ventilator the more he's going to work to breathe. They stepped up his feeding from 7mls to 9. His goal is 20mls every 3 hours. He had another great time with mommy today.

Tiny Hats, Big Boy

We got the Hats on Friday, and they are so cute. I had to work for a couple of hours on Saturday, so Baker's mom went to the hospital before me. When I finished with work, I grabbed the hats and went to the hospital. I got there just in time while Teresa and the nurse were doing their "hands on". As I explained earlier preemies are very susceptible to sensory overload, too much stimulation can cause the little guy to shut down – so the nurses limit the time that they have to touch him (change diaper, take temperature, move position, etc.)

Anyway the hats were too small. Now this is a really good thing, finally my son was TOO BIG for something!!!! This made Mom and Dad so happy. The little guy that is growing so fast is actually too Big for a piece of clothing. They probably would have fit his first week. We are also so thankful for Barb's work; the hats are going in his Baby Book and were beautiful. I'm going to take pictures today, and post later so check back later this evening.

Mom got some good quality time with Baker; we started up the kangaroo care again. Since the last failed attempt it was hard to get up the confidence to start it back up again. It is so very odd and cruel that I'm talking about holding our baby. Mom has now been able to hold him 3 times since he was born one month ago. We finally after talking to two nurses that have experience in other NICU's and are strong advocates for kangaroo care, mom got her confidence back. We are going to move forward with this and hold him as much as possible. This is good for both son and mom, her milk production about doubles when she holds him.