Her first dress

Sophia had another good night last night and day today. Her sedation medicine was weaned one more time and should be turned off tomorrow. She could also be fully weaned off oxygen tomorrow if she has another good night tonight. There have been no decisions on what the doctors are going to do with Sophia's feeding issues but she will have an Upper GI tomorrow to make sure she doesn't have any bowel obstructions. After they get the results of the Upper GI they will probably discuss a different style feeding tube and possibly a procedure to help her with acid reflux. We have also asked them to look in to the possibility of closing her fascia (the tummy hernia).

It's really neat to hear all of the nurses comments about Sophia and you can tell that she is really liked by how they bring her toys like a mobile and a musical fish tank for her crib. Her quilt on her bed also gets changed rather frequently. Last night the nurses joked about fighting over who was going to snuggle with her. The nurses also like to change her clothes and tonight I helped them put her in her first dress...Sophia told me to thank Aunt Sarah for finding her such a cute one! The nurses on the unit just rave about it.

big brother, bed fairies and snuggles

Sophia had a visit from the big girl bed fairy last night. She was up graded to a crib and seems to be loving it. She had a really good day today. Her heart rate was wonderful, even when she got upset her heart rate stayed lower then it has been. She also did so well breathing on the lowest setting of high flow that she had been converted to regular oxygen. Her sedation medicine was also weaned today.
Sophia's fun did not stop with the bed fairy. We also got the Ok to hold her again today, so needless to day we took advantage of the chance. I held her for over three and a half hours today and Maw Maw held her for the first time for over an hour. Liam also stopped in to say hi to his Lil sis. He really liked her crib, I think it made it allot less intimidating for him. While he was there he gave her fist bumps all on his own (touched his fist to hers), he held her hand and he gave her three smooches on her head. He's going to be such a good big brother and We are very blessed to have both of these wonderful kids... given the situation I couldn't think of a better way to spend mothers day.

Overall today was a quiet day for Sophia. She had quite a few happy awake times today , some of which that lasted over two hours. one of her awake times she got to meet her great Aunt Sheri and her cousin Katleyn who came and visited her from Kentucky. They thought she was even prettier in person then she is in pictures.

She did have two small changes today that were very important ones. Her high flow oxygen was turned down to 2LPM, which is the last setting on the machine. That means that she will soon be on regular flow oxygen. She also had her sedation medicine weaned which allows her to have more of those happy awake moments. The nursed are really impressed how well Sophia tracks voices and objects with her eyes, especially when she is on sedation medication that could make her see purple elephants.

Sophia threw a curve ball today

Who would have thought that eating would be such a hard thing? When we were told that eating could be the hardest part we really did not think about to what extent they actually meant. In several blog posts I have talked about the tube that was placed in Sophia's stomach,and intestine. You might remember that it moved yet again yesterday so today she went for another field trip to have placed again. The Radiologist said that this was his last attempt at placing the tube and if it failed the doctors would have to look into why it was it was hard to place and why it moved.... Ok at this point some of you might be worrying about her nutrition if the feeding tube is failing what is she living on? Well that's the easy question to answer...Since Birth she has been on two different things called TPN and Lipids. She is still on them and with the feedings currently stopped to figure out what's going on her TPN and Lipids have been increased to sustain her. TPN is basically electrolytes its a yellow sticky substance, Lipids are basically fats, both give her needed calories and both are given to her through something called a Pic line (with is basically an IV line). So currently we are waiting to hear from the doctors what the next step is. Most likely the doctors will check to see if there are any kinks in her intestine or is there are any valves in her stomach that aren't working right. She could possibly also need a different type of feeding tube. We are told that is is not uncommon for CDH-ers to have these types of problems and that they are very fixable, it just takes a little time to figure out what the best treatment is.

I also should mention that she is still down to just one little glowing red oxygen sensor, it moves in between her hands and feet about every 4 hours. This is done to help prevent sores. So some times you'll see it on her hand and some times you won't.

One tough tootsie

When visiting Sophie you never know what pose she'll be striking for you. Tonight she was cracking me up with this tough looking pose. It was as if she was saying don't worry mommy I am tough and that she truly is. Today was another roller coaster, nothing truly major happened. She had some unhappy moments and was a little raspy so they took her High flow Oxygen from 4LPM to 5LPM they then did an x-ray and did not believe that the High flow was the issue so she went back to 4LPM. Then in rounds they moved her feeds up to 8ML per hour a little later her repogal started having formula in it so they dropped her feeds to 7 ML per hour. She a little later had a few spit ups so they ordered a stomach x-ray and found out that the NJ tube moved again... to a little higher in her intestine just after her stomach, thus causing the occasional formula in her repogal. They are hoping once again that the flow of formula will move the tube back to the NJ position and not move higher into her stomach. So as I said the day was a bit of a roller coaster but overall she is still doing well. Also I am happy to report that even with the roller coaster ride she was on... she also has had some really good awake times during the day as well.

Caring for Sophia

In the last month we have met allot of medical staff while visiting the RCNIC. We have learned very quickly that we are not the only ones caring for our little Sophia. While there is a visible division between the staff that are just taking care of her and the ones that are truly caring for her they are all very important cogs in the wheels of her getting better. You know the ones who truly are caring for her by the little statements that they say like" I thought about her all weekend" you can also tell when they get protective over her and truly get nervous when things change. As I have said in the past we have really come to appreciate her caregivers and you can tell that they want her to go home as soon as she can and also be successful when she leaves here. Although we should never pick a favorite I would say that Patrick and I have. When she cares for Sophia she looks at her lovingly and talks to her as if she is her own. She also explains things very clearly and really empowers us as parents to say something if we believe Sophia needs something. She knows Sophia as good as we do and seeks our opinions on decisions. She truly goes beyond just taking care of our little Sophia. While she is our top choice there are several others that also care for Sophia at the same high level and we are very grateful that they are taking care of her as well.

Today Sophia took a field trip to have her feeding tube moved back deeper into her intestine,(where it was before it moved a few days ago). While she was still doing well, she would get uncomfortable and her heart rate would go up and the drainage from the tube in her stomach started to get cloudy so the doctors felt it would be in her best interest to get it back where it was earlier in the week. Since she took the field trip before rounds and was doing good they were able to start weaning more medicines. Her sedation medicine got lowered, they discontinued her Pain medication, and the High Flow Oxygen was also lowered to 4LPM (liters per minute). They also felt that one of the two oxygen sensors was no longer needed, so the little red glowing thing you have seen in pictures on her hand is now gone too.

Things you wouldn't normally think about

With a typical pregnancy there are things you would never think about when holding your infant. When you are a parent of a CDH'er when you hold your little one you are concerned with things like: are the tubes or wires pulling on your child? Or is the way you are holding her is making it harder for her to breath? You also get to know their heart rates and how they soar when your baby gets upset and calm when they are in a deep sleep.

When you are a parent of a CDH child you learn quickly that things that would have once scared the snot out of you are now part of the routine daily roller coaster to recovery. Now please don't take this blog post the wrong way our little Sophia is still doing well and is still a CDH Super Star. I am just simply stating that there are a lot of little things on a daily basis that is different from a typical pregnancy. While I might not be up right now every two hours to feed our little Sophia, I have learned that the everyday roller coaster and the stresses induced by that can wear a person out almost as much as the feeding schedule.

You may notice in the picture that the tape and tube is pulling a little on the skin by Sophia's eye, Just after I took the picture I showed the nurse and she fixed the tape so it did not pull.