Surgery 7:45 a.m. tuesday

Sophia had another good day today and is getting ready for her surgery tomorrow morning. She will be in the OR for around 4-5 hours to have several small procedures, during that time she will be re-intibated, have a procedure to help her acid reflux, have an external feeding tube called a G-tube placed in her stomach and if possible have her fascia closed. It is a Big Big day for her but we are confident that she'll do well through the surgery's. We are told that she'll probably be on the vent for 3 days or more to help her with any pain that she has and also because she will be back on sedation medicine. So tomorrow we'll once again be playing the what's back game. Please keep her in your thoughts and prayers for a speedy recovery.

Sophia got to do a little snuggle time with Aunt Sarah tonight. Aunt Sarah gave her a special pep talk so Sophia should do extra special good .

Just hanging out

I am happy to report that Sophia is having another good day. She is simply hanging out waiting for her procedures. We are really excited about the procedures, we are told that the two top CDH Surgeons are the two who are going to do her procedures so she will be in really good hands. One of the doctors in particular, we have heard nothing but completely wonderful comments about from the nursing staff . He is one that we met on our initial visits down here, not only is he a good surgeon, he also knows how to explain procedures in layman's terms, and he truly cares about his patients. We could not think of two better Surgeons for her.

Snugglelicious

Sophia had a snuggly day today, Patrick and I held her several times throughout the day. We were told today that they believe that she will have her procedures early this coming week, so we are soaking up the snuggles , knowing that she won't be able to be held for a short while after the procedures.

The Plan

Today was the day that the Plan started to take shape and by the end of the day we found out that next week Sophia will have some procedures to help her be able to eat. Do to her acid reflux she will have a procedure called a Nissen which will stop her from being able to reflux, she will also receive a G-tube which is an external tube/port that will be placed in her tummy. While doing these procedures they will also try to close her fascia (tummy hernia). With these procedures she will need to be placed on a vent again and will also have to have pain and sedation medicine. She will be able to come off all of these things faster then she did the first time and she will be able to start eating through the g-tube. The Occupational and physical therapists will work with her in teaching her how to eat orally. Feeding through the g-tube will allow us to get her to full feeds faster and will get us home sooner. Both the G-tube and Nissen are things she can grow out of and are essential to getting her on the road to a full recovery.

Liam got a chance to hold Sophia today as well. He sat on my lap and had a boppy pillow around him that Sophia laid on. He was a little uncertain about the whole thing but he did very well.

Liam and Maw Maw headed home today and Daddy Patrick came back to stay for a few weeks.

big yawn

Another day gone by still no "plan", but Sophia doesn't seem to mind. She is just hanging out and enjoying all of her snuggle time with us and the nursing staff. She is only 6 weeks old but you can already see her personality. She is very sweet, quiet and inquisitive. While she is awake she just soaks in everything around her, she is very interested in the world around her and really looks at you and listens contently.

Hopefully we will have a plan soon and will get her moving forward again. Some times though moving forward might seem like moving back, if she needs a procedure to help with eating she will get re-intabated, but should be able to extabated allot faster then the initial extabation. She will also most likely get put back on pain and sedation meds if she has a procedure. These are not things that should worry anyone if they happen, it's just what is done to help with pain management for procedures.

Please ignore the date on the pictures, I somehow turned on the date function unknowingly and the date was set wrong on the camera.

What to do?

What to do is the question of the day. For Liam the question was answered by going to the Newport Aquarium and visiting his little sister. He really enjoyed doing both. He is actually getting more comfortable up in the RCNIC. I believe that Sophia being in a crib really helps it not be as scary for him. It also helps that she is doing so well and is playful.

We still have no answers as to what the "Plan" is at this point. She did get her Upper GI and she also got a tummy ultrasound. It seems that her tummy is not draining into her intestine as it should. The doctors are currently deciding what the best plan should be. Hopefully tomorrow they will have made some decisions...until then we are just glad that Sophia is feeling good despite not eating as she should..Two cool things that happened today is that she started occasionally taking her pacifier, this is very important for when she starts feeding orally. Uncle Scot and Aunt Sherri also came down for another visit. They will get to see Sophia again tomorrow before heading home.

Baby steps and Butterflies

If we have learned anything in the RCNIC it is patience. Nothing is set in stone until it is done. Sophia's Upper GI was suppose to happen today but due to a heavy schedule in the office that does them her Upper GI could not be scheduled until tomorrow. So tomorrow morning she should take her field trip and once the doctors have the results we should find out what the "plan" is.

You can see from today's picture that she is doing quite well, nurses who haven't seen her in a couple of days said today that she looks the best she ever has, not only that but she is so content. If it was not for the tubes on her face and scar on her belly you'd never think that she needed a tune up. Although she did not have her Upper GI today she did have her sedation medicine and oxygen completely weaned. I would think that she should have the nasal cannula (clear tube you see by her nose) removed some time soon although if she needs another procedure to help her be able to eat I would think that she could be back on oxygen some time soon.

This afternoon Liam, Maw maw and I got to slip away to see the Butterfly show at the Krohn Conservatory. It was really neat. Liam loved running though the show and a butterfly decided that it liked Liam too, the butterfly landed right on his forehead. I think the butterfly liked it more then Liam did.