Day 6 - speechless Saturday

Having a newborn in the Neonatal Intensive Care Unit causes a parent to certainly learn ALOT, each and every day. Today, Caleb was changed to nasal oxygen vs. the oxygen hood! It is SO nice to be able to see his precious face out from under that thing. He was also taken off the warming bed. So when we got there today he was bundled all up in blankets. That was certainly different too. Thankfully he is not having any problems maintaining his body temperature. With all this, we got to HOLD HIM today! :) He still has the central line in his belly, but that will hopefully come out tomorrow if he manages to continue to handle his bottle feedings well. Here are a few pics from today...that truly leave us speechless. They speak for themselves. :)

Day 5...

Hello again! Today has been much like the last couple days...sleeping, eating when they will give him a bottle and more sleeping. His oxygen need today has remained in the upper 20s and his personal oxygen saturation has been in the low- to mid-80s, pretty much the same as he has been the last 24 hours. They are hoping to try nasal oxygen tomorrow and see how he does. It will be SO nice to see him without the big hood of oxygen covering his head!! Here's hoping it works well enough for him at this point. The doctor is also hoping that by Sunday, he will be receiving enough liquids by mouth and feeding tube that they can take out his "central line" which is all the extra IV fluids/lipids, etc. going in to his belly button. We are certainly seeing progress and are so thankful to each and every one of you for your support and prayers!! We never imagined Caleb would be doing this well a few days after birth and are so thankful he has not needed surgery thus far and/or the medicines the cardiologist figured he would need after birth to keep the heart valves open. Here's hoping tomorrow we have a great picture of him with eyes open and NO space helmet! :)

On the 4th day since my birth day...

I am truly sleepy! Not much change today. Thankfully, last night his oxygen level needs did not continue to rise as I was worried they would. He was certainly far from the 20% need where he was earlier in the afternoon, but I am thankful they did not creep up and up all night. I think he got back up to 45 or so, but today when we got there to visit he was back down to around 30% going in his hood. Although, his blood oxygen level was only in the upper 70s to low 80s. Guess that is okay. Just not as great as the day before. This evening when I called to check on him, the nurse said he was staying at 25 for most of the afternoon, she could not move it up or down much and that with 25% oxygen in his hood, he was maintaining a blood oxygen level in the 80s, so that was better then during the night. Hopefully he will remain that 'stable' tonight as it seems he tends to need more at night for some reason. The last couple nights he has needed a little more oxygen then during the day. So hopefully tonight he will remain at 25. The next goal will be to remove the oxygen hood and just need the nasal oxygen...but he has to be stable with an oxygen amount to just go with the nasal oxygen probes. Neonatologist quickly stopped by his bed this afternoon when I was there and just mentioned that he was having a little trouble with the bottle feedings, but hopefully with some practice he would get better at it. He sucks so hard on the bottle when he is allowed to drink from it that he tends to breath really hard and has a hard time with the gulping, but again, hopefully with some practice he will master the bottle process.

90% of the time when we go to visit him, he is asleep. He tends to only wake up if you start doing something like trying to feed him or change his diaper, etc. Needless to say, he does not like to be woken up. I am sure he will be good and awake by the time he gets to come home! :) So enjoy today's picture with his eyes open!!

Thank you so much for sharing this journey with us! We could not do it without all the prayers and support.

John & Joanna

Day 3

Wow - what a day! I am exhausted, completely - so this will be short. A very bitter-sweet day to say the least. I joined Caleb in the NICU this morning where his oxygen help was still about 45, which is what it was the night before. So at least it was stable. Over the course of the morning, the nurse was able to turn it down little bits at a time and Caleb was able to keep his own oxygen level within the range they have set for him. The neonatologist also changed his feeding tube orders from 2 ml every hour to 4 ml every hour. He also said to try 10cc's (less then an ounce) of a bottle twice a day. So the nurse mentioned she would like to give him a bath a little later in the morning and then we could try the bottle a couple hours after that. We can't over stress him and the bath was certainly not his favorite thing to do. Not that being soaked with water in your bed would be fun for anyone. So that was enough for that visit. Later when we went back around 4, our last trip in there before I headed home, his oxygen help/hood was only in the 20s! The nurse said that we all walk around with 21% oxygen in the air, so once he was able to handle his oxygen level with only 21% oxygen, they could try to take the helmet off. What a blessing that would be and certainly helped this momma feel better as she was having to head home without him. It was bittersweet to come home without him, yet wonderful to be with Ryan and Sara again.

Oh, he took the 10 cc bottle like a champ - which is very good for a Down Syndrome baby. A lot of DS babies do not know how to suck or have such tongue issues that they can't suck on a bottle, etc. So it was truly wonderful to see him drinking anything out of the bottle, even if it was a tiny amount.

We called this evening to get an update and were kinda discouraged to find out that his oxygen hood has had to be turned back up to 35. We were so close! The nurse mentioned that she had called in a respiratory specialist to make sure all of the leads, etc. were working properly that it wasn't an equipment failure or anything like that, but no - for some reason Caleb is needing more oxygen tonight. We are just praying that it does not continue to go up, otherwise the respiratory specialist will have to be called and who knows what they will end up doing. :( Not fun news as I try to go to sleep and spend our first night at home without him. Here's hoping it will not need to be turned up anymore over 35!

See you tomorrow...

A quick pic without so much 'gear'...

I was able to catch a quick phone pic this evening when I went to see him. He had the hiccups, so they took off the photo therapy lights and took off the eye patch, etc. in order to get him a pacifier to get rid of the hiccups. It worked like a charm, so it was quickly back to all the gear and lights...it was nice to see his eyes, if it was only for a few minutes.

Day 2

Sorry these end up being out of order and you have to start with the one below it to get started...

Day 2 has been up and down. I went down to see Caleb around 8 am as I was not about to wait for anyone to get here to go see him. :) I have been blessed to be able to spend two days/nights here, since I have really not needed the second day, but thankfully they know his situation and did not kick me out of the hospital today.

This morning, Caleb was needing almost 100% oxygen in his helmet in order to keep his O2 level up, so that was hard to see. Otherwise, he was the same in all other areas. Today, he also had to be put under the photo therapy lights for jaundice. It is amazing how many wires and tubes they can fit on such a small body. Now we add some really cool "sunglasses" to protect his eyes from the photo therapy light and we have a really 'cool' spaceman!

At lunchtime, when we checked in on him, he had been given a feeding tube through his nose where they were slowly feeding him to help him feel comfortable as they called it. He is getting very little and it is pumped very slowly in, but it is something! :) So the latest picture of him for today has even more going on then yesterday! How many wires and tubes can they possible fit on such a small body?!

My last visit with him at 8 pm was encouraging. His helmet/hood was down to only providing 45-50% oxygen VS. the 90% he was being given this morning. His O2 level was doing okay staying in the range it needs or is expected to be in. So I was hopeful that meant he was turning the corner so to speak. Of course, when I spoke with the neonatologist he just had to pop this mom's bubble and remind me that his personal O2 level is just part of the puzzle. That we have to wait out the 7-10 days where a newborns body has to regulate their pulmonary and heart rates, where his heart rate could be fine, but the amount of blood flow going in and out of the lungs could be too much or too little, etc. So, I was once again reminded that we still have a long road ahead of us and wonder IF he will need surgery in the weeks to come and WHEN we will ever be able to bring him home. The trip to and from Fairfax Hospital is a long one and once I am released tomorrow it is NOT going to be easy to see him near as much as we would like. Although, we try to hold on to the day that we WILL be able to hold him. This momma has not been able to hold her baby yet...just too many wires and things that could get knocked loose. Not to mention, he has to be under the hood for his oxygen. Oh...one day...what an amazing feeling it will be. His initial cry after he was born was certainly something his daddy and I were holding our breath to hear. Most new parents do...but in Caleb's case, it was crucial for us to hear it!! :)

Thank you so much for the prayers and support. I do not look forward to coming home tomorrow without him and the days ahead where we will be traveling back and forth to see him. We appreciate your prayers in the upcoming days and pray that his little body will continue to grow and function the way it needs to, without surgery!

See you tomorrow. :)

Joanna

A little early and completely unexpected...but hasn't that been the story for the last 8 1/2 months?!

Welcome to the world, Caleb Andrew!!

Day 1: We never imagined we would be updating this blog to let you know that Caleb has arrived...and in true Caleb fashion!! :) As with the entire journey we have been on so far, his arrival into the world was nothing short of a miracle and a complete surprise. We were all prepared to welcome him on the induction date which was set for 8/11 (39 weeks), but of course, he decided he was done waiting and he arrived 10 days earlier then that. I woke up in the night Sunday night to extreme back pain. I tried to do things around the house, rather then lay there and think about being miserable and not being able to sleep. The back pain grew more intense and I realized that it was coming every 2-3 minutes, right from the start. After trying to put it off for an hour or so, I woke John and told him I thought we needed to head to the hospital...something certainly was not right as I was experiencing such pain in my back that I was having a hard time breathing or talking through it at this point. We had NO emergency plan in place, so we called John's parents to see if they could come down to be with the kids. Okay, it was before 4am, so it was basically come and 'sleep' till the kids woke up. After a few minutes, I realized I could NOT wait the hour that it was going to take them to get to our house and so we called our next door neighbor to come in the interim. You know you have wonderful neighbors when you can call them in the wee hours of the morning. THANK YOU, Christy! :)

Off to the hospital we go...my back pain turned into all over insane pain and it was NOT letting up at all. I think I could count 20 seconds of downtime before another episode would begin again. I knew I was in trouble. We had an hour long car ride ahead of us to get to Fairfax Hospital, which is where he needed to be born because of his heart conditions. Half way to Fairfax I told John he needed to hurry up. Things were certainly progressing quickly. After surviving getting through the initial registration people on the main level of the hospital, I had to then endure the triage lady on the labor and delivery floor...I mean really...could they not tell by my body language and look on my face that I was seriously going to have this baby right there on the floor?!? A nurse came out and took us to a room and asked us more questions and finally realized that I was SERIOUS about what was going on. Thankfully, labor was not too stressful on him as he did fine. It was certainly worrying me that he was to be induced just for that reason - to keep him monitored during the labor process. When it was all said and done, the nurse said we had checked in to the hospital at 5:09 and he was born at 5:27!! No epidural, nothing! He weighed 8 lbs. 3 oz. and is 21" long.

He was whisked off to the NICU (neonatal intensive care unit) as soon as he was born to be closely monitored. He will remain there until his oxygen level can remain in the upper 80s/low 90s (we walk around with our oxygen level at 100%) without any extra oxygen help. He did not seem that bad off in the beginning and the cardiologist did a check of his heart and said that it looked as they expected. In other words, it did not look any worse then what they had seen on all my previous sonograms. So far he was holding his own with extra oxygen (which is the piece that looks like a space helmet). By the end of the day he was on a lot of oxygen in order to keep his O2 rate in the upper 80s, we were not sure what this meant. The neonatologist wanted to start him on a heart medication already, at the end of day 1, but thankfully the cardiologist stepped in and said he needs at least 24-48 hours to see how his body starts to regulate things on its own...so they stopped the medicine...