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.

Snuggle Time and Visitors

Sophia did very very well overnight. As with surgery the first 24 hours after having the vent removed is the most critical. Overnight she leveled out and really started to enjoy life with out the vent. Her Blood Gas test this morning was perfect and with that she also got to be held again.

Overall she had a really good day and good evening today as well. One thing that did occur today was that her NJ line moved. It was discovered immediately and was pushed back in. The tube is still at the edge of her intestine and is still working fine but it is not where is was originally placed. She has earned herself a baby sitter who sits at her bedside when a nurse or I are not there to watch and make sure that she doesn't pull that tube out. If it were to come out more she would just have to take a field trip downstairs to have it placed again.

Today Sophia got to see her big Brother Liam again. He came up with Maw Maw and spent about a half an hour at her bedside. He did so well again and the Nurses were really impressed with how he acted. It is not the easiest place for adults to sit let alone a 2 and 1/2 year old. You could really see his concern for his sister and we explained that it was ok and that she was working to get better so she could go home and live with him.

The day ended with Sophia getting a bath. She was really content through the whole thing and she really loves when she gets her hair washed and massaged. You may also notice that she is now getting to wear clothes. Her first outfit was put on her this morning and we put a fresh outfit on her after her bath.

Can you find what's missing?

Today was a huge day for Sophia. She took big steps and had her vent removed. We are not out of the woods yet. Sophia has to stay stable on her high flow oxygen. She is currently at the 6LMP and can go up to as high as 8LMP before they would put her back on her vent. The new high flow oxygen machine starts at 2LMP and tops out at 8LMP. It is not uncommon for CHD babies to have to be re-intubated but we are really hoping that our little Sophia will be able to keep up the good work and continue to progress positively as she has done these past few days. She really seems to like not having the tube in her mouth. Her heart rate has been and has stayed lower then it has the last several days. Sophia is also tolerating her feeds and is up to 4ML per hour. She has an Echo Cardiogram and a blood gas test scheduled for tomorrow, the results of the tests will tell us how she is doing with all of her changes.

Although Sophia still has tubes in her nose that are taped to her skin it is really nice to be able to see her little face for the first time with out the respirator and all of the tape that went along with it .

All snuggled in

When we went to visit Sophia this morning she was all snuggled in on a Zflo pillow, for the first time since her surgery she got to have some tummy time and she was loving it. This evening we got to play the whats gone game again for the first time in several days. We have been playing that whats back game and I think I like the whats missing game better. Her Nitric finished weaning at 6 p.m. tonight and so far she has been doing well with it...she has been receiving her new respiratory medicine and had been actually absorbing it so it should not bother her to have it gone this time. If you remember from the last time we had the Nitric weaned this was a very big step towards being extubated or other wise known as having her breathing tube removed. If things keep progressing well she should have the vent removed in the near future. She also had her feeds increased again today. She is up to 3ml an hour.

Patrick headed back to Michigan today, he will start back to work on Monday. The plan is for him to work a pay period then come back for one and so on. Mom and Liam have come down and will be playing in Cincinnati until Patrick returns. Cincinnati is full of cool things for kids to do, He has already seen the Krohn Conservatory and the Newport Aquarium. We will probably head to the zoo this week.