100th post!

Sophia would like to say hello and tell you about her fun day today. She has had several awake periods and during those times she has taken allot of interest in her mobile and her fairy doll. She was actually reaching towards the fairy and batting at her little rattle purse. It truly amazed the nursing staff.
This evening when I visited her, her feeds were up to 20ml/hr. By Wednesday they believe she will be up to full feeds (27ml/hr). At that point they will start to consolidate feeds into a schedule instead of continuous feeds like she is getting now.

Two month celebration

Wow, we must be having a lot of fun because time has certainly flown by...Has our little Sophia really been around two months? And what an eventful and amazing two months it has been.

This morning four friends from Michigan stopped in for a visit. They were so excited to hear that they could actually meet Sophia and were amazed with how big she is getting and how healthy she looks. They also got a tour of the Ronald McDonald house and stopped by our favorite neighborhood Chipotle.

Sophia was also visited by her Grandma Huber and Aunt Vicky. They got to see how Sophia gets tastes of formula before they headed back to Michigan.

Sophia seemed to be feeling better today. Her heart rate was back down to her more normal range and she woke all four times I visited today. She was able to taste feeds two of the four times. Each time she tried a little more then the previous time. She is up to about 12 tastes/drops during an awake period. While that doesn't sound like much, it is wonderful that she is making the little steps forward. She is also up to 16ml/hr on her feeds. Each day she makes more little strides forward to a journey home.

Thanks to all once again for keeping her in your hearts, thoughts and prayers through this and in the future.

Mark, Ashley, Ronald, Jen and Dennis

calm day

Sophia had another calm day today. Rounds were even shorter today then yesterday. They basically just stopped and discussed her vitals. This afternoon she had surprise visitors. Aunt Vicky and Patrick's mom came into town to visit. They spent over an hour visiting with Sophia and also got to visit with Liam at the Ronald McDonald house. Liam gave them a tour. By 8pm tonight Sophia was up to 12ml/hour on feeds and is still doing well tolerating them. We have noticed her heart rate is a little higher then it has been but it could be her getting use to a feeds. Maw Maw and Liam also dropped in the unit to visit Sophia and found out that she was up 1 1/2 ounces in weight. She is now nine pounds 15 ounces.

quick rounds

When you have a little one in the Rcnic you can tell how well your baby is doing by how quick rounds are. For those of you unfamiliar with what rounds are...they are when the doctors, nurses, nutritionists etc... gather around the patients bedside and talk about how the patient is doing. They discuss the patients vitals, test results if any, blood gas numbers, what to change, what tests the patient needs in the future just to name a few. When the patient is not doing great the rounds on the patient can be a little time consuming when the patient is doing well as Sophia is they can be really quick. Almost so quick that it feels awkward because it seems like there should be more to say...but there isn't. Today the only change was to the medicine that helps transition her off her pain meds. They lowered it. They also had her get her two months shots, which she did very good with. The feeds remained the same at 1ml up per 6 hours. Other then that there was not much else for the doctors to say. Today the tastes went well, Sophia sucked on a nipple a little and had about seven to ten little sips (drops). Every time I go in and she is awake I am to work on tastes with her. If she keeps showing interest she might be able to take a small volume by mouth soon.

First taste

This morning Sophia had her first taste of food. Since she has never had a bottle we started with baby steps. The Speech theripist had me dip Sophia's Pacifire in some formula I put it close to her nose so she could smell it and then placed it on her lips. The formula dripped on to her lips, she licked it, made a face then kind of gagged. She then got the hiccups and proceeded to fall asleep. Gagging is not uncommon, it just shows us that getting her to take a bottle is going to be a slow process. The Speech therapist visited Sophia's bedside three other times to try again but she was contently sleeping each visit, so we'll try a taste again tomorrow. The doctors upped her g-tube feeds again today as well, her feeds are now increasing 1ml every 6 hours and as of 8pm she was up to 5 ml per hour. The doctors also said that I should learn how to clean her g-tube and give her, her meds. We are also going to start trying to establish a daily routine for her. This evening Maw Maw and Liam visited with Sophia for a while. She snoozed the whole time. While visiting Liam likes to play with her mobile and also color the coloring sheets that the family life specialist leaves behind for him.

Feeds and fun

Sophia had another good day. They have upped her g-tube feeds again to 2 ml per hour and will increase them by 1 ml every 12 hours. She will also get to start working with a bottle with the therapists. They will be able to give her the amount of feeds orally that she is getting via g-tube. So if her feeds are up to 2ml per hour on the g-tube. They can try to get her to eat 2 ml by bottle. As the g-tube feeds increase so will the bottle feeds, that is if she will take them orally. Earlier on I had spoken about oral aversions. Since birth Sophia's mouth had been messed with she might have problems taking the bottle, and we have also learned that some babies never take a bottle due to the aversions. We are really hopeful since she is sucking on a pacifier from time to time that she will eventually take to the bottle and grow out of the g-tube feedings.

Today Liam and maw maw stopped up to visit Sophia. There was a procedure on another patient so they just got to say hello and we had to leave, so we decided to go to the Cincinnati Museum Center. Now I am not a museum buff but this place was really neat. We spent around 5 hours there. The lower level was a children's museum it was so cool in there that Adults would even think it was fun. There was a large crane that you filled it's bucket with rubber rocks and put them in a dump truck, a Grocery store, a diner, a ball area (but not your typical pit), a huge water table and a large forest area that he could climb around in just to name a few. The Cincinnati history museum had a huge train diorama of Cincinnati that Liam adored. The natural history museum had a cave and ice cave to walk through. The cave really felt like an actual cave! All three Museums were in the old Art Deco Train station which made it extra cool.

Teeth?

Yesterday I has mentioned that Sophia was a little fussier then usual, Most people would think that maybe her incision was still tender or that she was just plain tired of being messed with all of the time. Today I think that I found a source of irritation for her. When she was fussing I noticed two small white spots on her lower gums. Upon closer examination it appears that she has two teeth coming in. Who would have thought? I guess she thought she needed them for her feeds. Speaking of which they slowly started feeds this afternoon. Our little tootsie is on her way.

Today Sophia also made her movie debut, her hair was a little messy, but she was wide awake for the camera man. It was a really neat experience for both of us.

Ready for her first movie debut

Sophia did well again over night although she has been a little more fussy then usual. Being all that she has been through in two short months you'd probably expect her to be crabby. But honestly she is really content most of the time, she soaks in everything that is around her. The nurses are amazed how content she is, they say alot of CDHers are pretty crabby. As you have all read Sophia has been on pain and sedation medicine for a good chunk of her life thus far and we believe that she was having a little trouble with being off of it. Now when I say this I sincerely mean just a little trouble, nothing to worry about. We noticed that she was dry heaving sometimes and that when she moved her arms or legs that they had a slight shake. These things coupled with her fussiness and not sleeping well told us that she needed a little medicine to help her. She seemed much happier since they gave her some. She is also very close to being able to start feeds, we are hoping that she will have them started by Thursday.

Tomorrow she will quite literally make her first movie debut, we have been asked to participate in a video shoot about Cdh'ers. I will be interviewed about the whole experience and they will also take some footage of Sophia in the RCNIC. The video will be used to help people understand CDH and also help bring people to this amazing Hospital. We are really excited and honored that we can be a part of this endeavour.

Sophia's crib

Sophia must have missed her big girl bed. After less then a week post surgery she is back in her big girl bed again. Today during rounds they weaned her continuous sedation medicine to off, removed her Foley catheter, ordered a suppository for her and decided to try her on room air. This is the first time since birth that her face has been 100% tube free. The doctors have said that one of two things had to happen before she would get feeds. She has to either A.) Poop (which the suppository should help with) or B.)have the excretions coming out of her g-tube be clear (not yellow or green/brown in color). Another big step was that I was once again given permission to hold her. She really seamed happy being held.

Patrick would have held her but he headed back to Michigan today to work for two more weeks. Liam and Maw maw are on their way down to stay again while Patrick is away. With how well Sophia is doing we are thinking/hoping/praying that this might be Maw Maw and Liam's Last trip down here.

Ta-DA!!!!!!!!!!!!!!!!!!!!!!!!!

Sophia did a magic trick today. She made her vent disappear. After talking to the respiratory therapist last night we thought at the soonest Sophia would have her vent removed would be on Monday. Well after having another good night, not receiving any additional medicine doses and being weaned off the Nitric the doctors thought she was doing well enough to remove the vent. Sophia agreed with them and is truly enjoying being off the vent. Today she also had her sedation medicine weaned to off , making it so she had allot of awake times, one of which lasted over three hours. Last time they took her off the vent she had to go to High Flow Oxygen then to regular Oxygen. Today she went straight to regular Oxygen and they believe that she'll be off of that with in the next two days. She still has a catheter and her pain medicine. When the pain meds are gone they will remove the Foley catheter. Soon enough she will be eating and in a big girl bed ...

I am feeling better...

Today was as if Sophia flipped a switch. She today really started to look and act more like herself again. Understandably she has been really swollen and sluggish since surgery. The last two days she even at times got really upset at the nurses from time to time when they moved her. Today the swelling really started to subside and she also started tolerating her assessment periods with out extra medication. Due to her being more tolerant the nurses gave her a bath and really seemed to enjoy it. You can see her crazy curls that appear when she is all clean.
Sophia is once again on her way to being off the vent. Her Nitric is once again being weaned and should be off some time tomorrow. If she tolerates that, there is a possibility that she could be off the vent before mid week. Today they also removed her repogal. For the first time since her birth her nose it officially tube free.
If you remember the last time we started talking about feeds, we discussed the need for her to poop. We are once again on poop watch. When she poops they will start feeds again ...this time through her G-tube. The doctors believe it could be a week before her bowls wake up and she poops due to all of the surgery. The good news is that her bowls are starting to make noise and that usually means that the duty is not far behind.

Sophia's equipment

By now you all know our little Sophia and all of her medical procedures. Now we are going to introduce you to her support. The first machine you see below is her Nitric Machine. This is what they use to keep her pulmonary hypertension under control. She was off this machine once already but as part of her surgery was put back on it to control her hypertension since they could not administer the other hypertension medicine while she was having surgery. The Nitric machine is one of the first machines/pumps we'll see go. Then next picture is her medicine pumps. The five pumps administer antibiotics, sedation medicine, pain medicine, Lipids and TPN. The last picture is the respiratory machine. It initiates breaths for her when she is to sedated to do it herself. As you would imagine with such a lengthy surgery she has been pretty sedated the last day and a half to help her with the pain. Another reason she is sedated is because it is not really nice to have the respirator in. Think about how you would like to be fully awake and have the respirator tube down your throat...MMM that's not my idea of fun. All of these machines need to go away before we head back to Michigan. The good news is that they should go away faster then they did last time, but it all depends on how Sophia reacts to the changes. If there is anything that we have learned about CDH'ers is that you have to take it slow because they don't really like fast change.

Recovery day

Sophia had a quiet day, she is as you would guess in the process of recovering from her surgery. She is a little puffier today then she was yesterday but this is very expected with the amount of surgery and liquids they gave her during surgery. Today the occupational therapist and physical therapist stopped by to see her. They have noticed that Sophia has been holding her hands a little differently so they have given her a baby splint for her free hand. It will help hold her hand at a more neutral position thus helping her wrist muscles. She wears the splint for 4 hours, then it is off for 4 hours. This continues throughout the whole day, she'll be doing this for weeks to come. The splints don't hurt her, in fact they will help her not develop future problems.

Successful surgery- fully wired

Today was a long day for Sophia, the surgeons and us. She was wheeled to the OR for surgery around 8:00 a.m. and did not return until around 3:00 p.m. One surgeon told us that while they were in removing scar tissue they could see why Sophia could not move food from her tummy to her intestine and they feel that they have fixed the issue. The surgery also included, removing her Appendix, the Nissen procedure (for her acid reflux), Placement of the G-tube also called a Mallencot and her fascia was closed( tummy hernia). You can see in the picture blow that she is "fully wired" but should with in the next week have a lot disappear again. Most of what you see in the picture below is to support her while she is sedated...When someone is sedated they are less likely to breath on their own so the vent initiates breaths if Sophia is to sedated to do it. She has an Arterial Line that is used to draw blood for blood gas tests instead of doing heal sticks. We are fairly certain that the Art line will be removed in the next day or so. She has a cathider so they can monitor her urine output and should have that removed soon as well. So although there is allot of equipment in the photo below there are really good reasons that she has them and most will be gone before we head home. The one thing that you'll see that she'll have for a while is the g-tube. It is the yellow tube coming from her belly. There is a nipple on the tube to keep it at a 90 degree angle so it doesn't close off. As you have heard in past blogs the first 24 hours is an indication of how she'll do. Tonight she is sleeping peacefully due to the medicine she got in the OR. Tomorrow will be a little harder for her due to that medicine wearing off and having the new pain medicine start. She is one tough little cookie and has amazed the staff so far so we are hoping and praying that she'll keep it up and have a fast very speedy recovery.

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.