Happy one month-

Sophia has had a better few days again, she is not quite 100% back to where she was before she had a couple of not so hot days but she is definitely doing better then she was. Her NJ tube is working well and today her feeds were increased to 2 ml/hr, which is better then she did with the tube in her tummy. She is also processing the food this time...the exciting part is that she is now pooping on her own. I never thought I'd be so excited about poop but when you have a little one that isn't pooping it is a really big deal.

Sophia is also being weaned from the Nitric again in hopes of getting her off her vent. The difference this time being that she is processing food and that she is absorbing her new respiratory medicine. Since she was getting sick last time the doctors realized she was not absorbing the medicine last time. So if everything goes right this time she should be off the Nitric some time tomorrow night and hopefully she'll be able to stay off of it this time, but there is aways a chance that she could go back on. If she continues to progress positively she could be off the vent this coming week. As you all might remember this was the point that set her back last time...She will let us know what her pace will be. Having them take her off the vent is an exciting and scary thought at the same time...the first few days off the vent will be hard for her because she will be breathing on her own for the first time. She is actually breathing a lot on her own with her current vent settings so they are getting her ready to do it on her own.

We like to say happy one month to Sophia and say keep up the good work kiddo! We'd also like to thank everyone again for all of the continued support.

Her first tent

Since we last spoke Sophia has started to feel better and she has big news... She is starting to poop on her own with out suppositories and that the doctors successfully placed the NJ tube (feeding tube) in the start of her intestines. They started feeds again today... so far so good. Since the tube is in the start of her intestines and her tummy was still holding gas the doctors also placed a repogal tube in her other nostril to help drain her tummy. She had the repogal tube up until the they tried feeding her the first time. We like to now say she is camping in the RCNIC with her new blanket tent. The nurses created the tent to help mask the sounds around Sophia, there was another baby in the unit that needed a procedure at their bedside and when that happens the unit can get noisy. As the doctors wean her medicine Sophia has been getting more and more sound sensitive. When it gets loud she gets agitated. Sophia told us to thank the nurses for the tent.

Since Sophia received the blood yesterday she is doing better, tonight she had a really long awake period and she actually played with our hands with her hand and with her toes. We hope to continue to see this from her and have more fun stories to share.

Pretty in Pink

Most people who truly know me are probably on the floor in shock with the title of the blog today but I have finally realized the beauty of the color Pink (or at least in some situations). If you have been following along you'd know that Sophia has has a harder time these last few days. She has been subjected to several tests and a lot of them required blood draws or sticks. That coupled with not processing things from her tummy and being a bit dehydrated leaned her towards being a little Anemic so today the doctors ordered her up a dose of blood to help her feel better and also it helped her look better too. Due to being Anemic she was pale very shortly after they started to slowly give her blood her Rosy pink color started to return. She truly is pretty in pink. The doctors in all of their testing told us that she is producing blood as she should but all of the factors put together made it so she needed the little bit of assistance. Today she also had her breathing tube changed, after being in for a month it started to get a bit clogged. Changing the tube out will allow her to breath a little more easily again.
Tomorrow they will try again to place the NJ tube (longer feeding tube) in the beginning of her intestine. Please keep your thoughts and prayers heading this way, Getting this NJ tube placed is very important in moving her forward again.

Doctors pushed forward Sophia pushed back

To each action there is a equal and opposite reaction. The last four days the doctors have asked a lot of Sophia, starting feeds, weaning nitric trying to get her to poop, an MRI, an Echo cardiogram, and x-rays just to name a few. Sophia has said enough is enough with all of the changes, in fact she has requested that she get some of it back. Now don't be alarmed, she is still overall doing well she is just telling the doctors she is not quite ready yet. Overall she has been agitated all day for several reasons. I don't know if you all remember me talking about how important pooping was, Well she has still been having problems pooping today we found out that her stomach is not moving things through as it should, thus causing the lack of pooping and also if she is not pooping it our it has to go somewhere, so she was spitting up the feeds. At this point the doctors and nurses are working to settle her down and figure out what to do next. She has also been placed back on Nitric and we are not sure at this point when they will try to remove her vent. With CDH babies you learn very quickly that they are the boss when getting better and some times you move forward a ton and then have to make a few steps backwards in order to move forward again.

Day of Delays

Today has been a day of delays from start to end. It all started when Maw Maw called to let us know that Liam developed a cold over night and that they would not be heading this was today for their visit. Poor little guy had a rough restless night and woke up with a rough throat and a barky cough. It's really hard sending get well hugs through the phone or via the Internet but we are doing our best to send them his way so they can come and visit Sophia soon.

When we got to the Hospital we were told that the MRI that was scheduled for Noon has been moved to 1800 hrs otherwise know as 6 p.m. we were also told at that point that there was another sterile procedure happening in the room on another patient so the room would be closed for a few hours. So we waited around for rounds and found out that her Nitric was to be done at 4:00 p.m. they were weaning her sedation medicine and that are going to put the longer feeding tube in tomorrow. When we came back after the room reopened, we hung out at her bedside until the crew came to whisk her off to MRI. We had a quick dinner and returned shortly after shift change at 7:30 p.m. She was not back yet from MRI so we headed down there and met them in the hallway when they where wheeling her bed back towards the RCNIC. She did very good in MRI except that she kept moving despite some PRN's of Versed (doses of sedation medicine). We finished out the evening with her and gave her a little snuggly elephant as a present for doing good with the MRI. She told us that she also hopes that her big brother gets better soon so she can see him. She thinks that she might have less tubes by the time he gets here so he wont have to worry as much when he sees her.

On her way to being a ventless model

Each day brings new changes for Sophia. Today she received the last dose of new respiratory medicine that she needed to have the doctors start weaning the Nitric she is on. She is now at less then 5% Nitric and in less then 36 hours she should be off of it entirely. This process will also spur the doctors to wean the Oxygen and also her sedation medicine. Our nurse thought that if everything went well Sophia could possibly be off the ventilator in a week or so. The Nurses are trying to be pro-active with feeding methods as well. Since Sophia has not dealt with the very minor amounts of feeds that she has received they are going to bypass her stomach for the time being, meaning simply that they are going to run a longer feeding tube to the beginning of her intestines and try to get her to absorb the food from there. The reason for this being that she is spitting up some of the food being placed in her stomach, when the ventilator comes out there would be a good chance that if she got sick that she could breath it into her lungs (this is called aspiration) and it would be very bad for her and would set her back a while. Placing the feeding tube in her intestine should stop her from getting sick thus allowing the respirator to safely be removed with out fear of aspiration. As she deals with things in a calmer manner they would try again to feed her through other methods.

As you can imagine after a major surgery and being sedated and on pain killers then having the pain killers removed and the sedation levels reduced, Sophia has becomes a little more agitated with her environment. Noise is a major source of aggravation for her and she sometimes gets unhappy now when the nurses assess her. With in the last week we have seen her try to cry a lot more, when her vent comes out we'll actually get to hear her cry. Although she is making the crying face, or squishy face as we call it, it doesn't mean she is in pain, a lot of the time she is just trying to let us and the nurse know that she is unhappy with whats going on.

Food not so fun for Sophia

Food is a lot of peoples favorite things but it is not one of Sophia's or at least not yet. Today during rounds the doctors decided to try giving Sophia formula. They start this process very slowly, she is currently provided 1 milliliter of formula every hour along with the lipids that she has been getting all along. The hard part for Sophia is that her body doesn't know what to do yet once the formula is in her belly. Currently the formula is not sitting well in her belly and she has been spitting some of it up. This is not uncommon for CDH babies and like I have mentioned in other blogs feeding can be one of the most difficult parts. We are truly hoping that she will become accustomed to getting food in her belly so the doctors don't have to place the tube further in to bypass the stomach and have it placed directly in her intestine for absorption.

The good news is that although she did spit up through the day she seemed to become less aggravated about the whole thing as the day wore on.

It was a very Big day for Sophia once again, besides starting feeds, Sophia also had her Sedation levels weaned more, her new medicine to help her get off Nitric was increased, she got a bath and daddy got to hold her for a while. Daddy Patrick did very well holding her through her spit ups and despite not feeling good Sophia loved snuggling with her daddy.

Cool Ride

When Sophia was born this is the cool Ambulance that transported her from University Hospital to Children's. Today was the first day I was able to get a picture of it for you to see.

Today was the Poop!

Today was my day to hold Sophia, she is a real snuggler. We sat together for a little over an hour and a half. While we sat and snuggled we also sat waiting for the second suppository to work. You see our little Sophia had not pooped since surgery and for the last few days we have been waiting for her to poop. While Sophia did not poop while I was holding her she did poop after she was given an enema shortly after 8 p.m. Three diaper changes later we believe she was done for a little while.Why is pooping so important you ask? Well as we all know the act of pooping helps cleanse you body of waste, but what you might not know is that part of Sophia's intestine was up in her chest and part of her surgery was to place it back where it belonged. One risk of the surgery was that the intestines might not get looped back correctly, since she pooped we now know that they were placed appropriately and are functioning. Another plus to pooping is that since her intestinal track is functioning she will get to start on feeds soon! You will see in this picture that there is a new tube in Sophia's nose. You learn very quickly in the RCNIC that getting tubes or new medicines can be a very positive thing. The new tube is a feeding tube that will be used for food in the very near future, today it was also used to give her a new medicine that will help the doctors wean her off of the Nitric. The doctors have also started to wean Sophia's Oxygen to a closer to normal level. These are all signs that indicate that she is still moving towards not having a ventilator. Way to Go Sophie! Hooray for POOPIES!

What's missing now?

Sophia had more meds removed today and also had her Repogal tube removed (tube that went in her nose and down into her stomach that removed extra stomach acids). Slowly each day something changes and we are once again playing the what's missing game. She seems to be tolerating the daily tweaks and we hope that she'll continue to tolerate them.

Today while at her bedside the charge nurse stopped in to check on Sophia it was really cool to hear her say how's our Superstar doing? To hear her say that really told us how well Sophia is really doing.

Life in the RCNIC

If you have never been a RCNIC you might envision a Serene place for little ones to sleep and get better. Or possibly you might think of a room where you hear the buzz of medical equipment. While both of these are true the things you might be missing is the beeping of medicine pumps when they are close to running out of medicine, or a sensor misreading and making the desat alarm go off , you will also hear the chatter of the nursing staff. You hear all of these things on a daily basis and they all are not really alarming. But there are days in the RCNIC that can be extremely stressful even when your child is doing very well. Today seemed to be one of those days. The day started off really serene and comfortable in fact, I got to hold Sophia for over two hours and she was extremely comfortable and happy. We left for a while and came back for rounds. when we walked to her Pod's doors (big room where her bed is) we could see that the doctors were rounding on another CDH baby so we waited until we were flagged in. We got to hear how well she was doing and could also see that the doctors were about to do a sterile procedure on another baby in Sophia's pod (we are not allowed to stay when sterile procedures are being done in the pod). We congratulated Sophie on another good report and headed out. We visited with Sophia before dinner and also headed back to say our good nights. While in the pod we over heard that a motor was not running right on a very important piece of medical equipment for another baby and they had to switch the motor out. This was not a sterile procedure so we got to stay in the pod and we kept Sophia as calm as we could during the commotion. All of the commotion was behind a curtain, but if I had a knife I could have cut the air in the pod due to the high level of stress that was in that room. Lets just say it was some of the longest 8 minutes that we have had while visiting Sophia in the RCNIC. Patrick and I kept trying to have a Wizard of Oz moments saying to ourselves "pay no attention to whats going on being the curtain" but when it is literally over your shoulder it is hard to not hear it. The motor change they did on the other patient went fine and the stress levels receded.

Hearing all of this was stressful for Patrick and I, because we met the mom before either of our babies were born, we also know how important the piece of medical equipment was and also because we both had a small fear of hearing the baby have a problem and having the major alarm go off and seeing all of the nurses run in, Thank God that did not happen for several reasons.

It truly is amazing how these men and women work in this environment everyday, I had a lot of respect for nurses in the past but nothing compared to the admiration I have for them now. I also have to comment on how blessed we are again that we were referred here so our little Sophia can receive this exceptional care.

Mohawks and Daddy hugs

Today at rounds we were giving permission to hold Sophia again and it was daddy Patricks turn. Patrick was very nervous about the idea of holding her but he did a wonderful job. While he was holding her she opened her eyes and looked around and was extremely comfortable. Also during the day her nurse decided he was going to do Sophia's hair. We walked in to wild woman Sophia sporting a Mohawk. It was cute and good for pictures but we combed it out shortly after.

Sophia also did very well with having her Flowlan taken away. It seems that everyday she just gets happier.

When we went back to say good night I once again got to help bathe Sophie. She did so good and seemed to enjoy it. She was awake the entire time for the bath and made all sorts of cute little faces. After the bath we helped change her bed linens and get her settled. By the time we were through she was all tuckered out, so we kissed her good night and headed back to the "Ronald house" as Liam says.

Another big night for our little Champ

Sophia is reaching out to you for a fist bump to her good health. She has had a really good day today. Each time we went to see her she woke up for a little while and looked up at us. She also moved her little arms and legs to stretch them and one time she even shook her fist at us. Noel her physical therapist stopped by one time we were there and told us again how well she thought Sophie was doing and how amazed she was with how much Sophia still moves around. She told us that she got to work with Sophia this morning and our little Sophia was awake the whole time and tolerated being worked with very well.
This evening we got the news that the Respiratory therapist was going to take Sophia off the respiratory medicine that she was on called Flowlan. This medicine helped reduce Sophia's Pulmonary Hypertension. Since her Hypertension numbers were very favorable and she was on the lowest setting they are removing the medicine. If Sophia reacts well to that being removed they will start to wean the Nitric that she is breathing. When the Nitric is weaned her vent settings will be the next thing for them to wean, which means she is working toward not being on a ventilator. We are not sure how long it will take to get her to that point but she is on her way!

looking good

With each passing day Sophia is looking better. You can see in the picture that there is a white strip on her belly. That is where they made the incision for surgery. Above that is a slightly pink area, you might notice a black line drawn on her, the morning nurse drew the line on to have a visual of where the pink area was to make sure the color was not spreading. Since the line was drawn this morning you can already see that the pink coloration was fading. The nurse did not draw on Sophia's skin there is a large clear adhesive there and that's what he drew on.

Sophia also found her mouth today with her hands. The nurses say that this is very good because it is comforting for babies to have their hands by their mouths.

Although CDH only occurs in 1 out of 2,500 babies it is not uncommon in the RCNIC. There are three other cases here right now and more are expected in May. We have met the parents for all of the cases and it truly is amazing hearing all of the differences and we are finding out that we are truly blessed with Sophia's condition. All four of the babies have now been repaired the length of time it took for them to have their repairs ranged from 2 days to 2 months. Now that's hard to interpret because the cases in the middle seem to be the two that have less sever conditions. In speaking to one of the parents they said the doctors anticipate them having to be here for 7-12 months. Although we have not been told any dates we believe that we will be home much sooner, but only time will tell.

We are truly blessed with our little Sophia and Liam along with all of our family and friends, her wonderful Doctors and nurses and the amazing Ronald Mc Donald House and its Volunteers and Staff .

Calm 24hrs since surgery!

Sophia has been doing very well the past 24 hours since surgery. The nurses told us that there was one point last night where Sophia got a little angry being evaluated and she got a little more pain and sedation medication to calm her down. Otherwise she did very well. She got the IV line taken out of her left hand that was put in for surgery and her Arterial line was also removed from her right hand. The Arterial Line (used to draw blood for tests and allowed Sophia to not get poked every time they needed to do a test) was the original line that was put in when she was born. It is very common to have these lines replaced frequently and she will most likely have one again at some time during her stay, but it is nice to have this one out for a little while and let Sophia have two free hands.

Her tummy is still a little swollen and the skin is pink around the incision but the doctors are not concerned that it is an infection at this time. They believe that the pink coloration is due to them having to stretch her skin a little to close the incision. They are monitoring it all very closely.

Earlier this morning Sophia did peek at us briefly and then began snoozing again. She is on some pretty good pain meds and they are keeping her sedated to assist with the pain as well. As we get further from the operation she will get less of all the medicines and will be weaned from her ventilator.

The nurses keep telling us that her lungs sound better then they ever have and that they can already tell that her heart is moving back closer to where it should be when they listen to her chest.

The recovery process for Sophia will still be a lengthy process, we don't have any idea yet as to when we'll be heading home it all depends on her and how well she tolerates being weaned from the meds and vent. We have been told that getting her to eat can be the hardest part and can keep babies in the hospitals for a while.

Road to Recovery

Sophia had a big, BIG day today. As we had anticipated she had her surgery and all went very well, in fact the actual surgery only took about 2 1/2 hours. The surgery placed her liver, some of her intestines and her stomach back where they belonged. The doctors created a flap in her abdominal wall and used that to close the gap in her diaphragm. We were very excited to hear that...that was the route the doctors took. We have been told that there is less chance of infection and or rejection when natural material is used to fix the whole. Another plus is that since it is her natural tissue it will grow with her and have less chance of having problems in the future. We spent most of the day at the Hospital with her or waiting for the surgery to be over. It was our longest stay at the RCNIC our last sign in was at 10 am and we signed out at 6pm. I like to say that we camped out there.

She still has a long road to a full recovery, but she is definitely on her way. It has been exciting to see her progress and get better before surgery and it will even be more fun to watch her get better after surgery because we will know that with each day she gets better it is one step closer to her being able to go home. Before we know it she'll be wrestling with her big brother Liam and the two of them will be riding in the back seat saying Are we there Yet?

We took this picture of Sophia when we were let in to see her just after surgery, you can see from the picture that she is doing very well.

Sophia should have surgery tomorrow (Friday)

Sophia is once again scheduled to have her tune up (repair surgery) tomorrow. Although there is a chance once again that her surgery could be post-poned. She is scheduled as an Add on surgery, which means that she could have her surgery anytime the O.R. is open. If another child comes into the Hospital with a life threatening condition, needing surgery, they would operate on them and Sophia's surgery would be delayed.

We would once again like to report that Sophia is doing really well and is very stable, the delay in her surgery date on Wednesday was due to her being an Add on and also that the Head Doctor wanted to have a look inside her lungs to make sure they were in good shape. Sophia had a little camera placed down her breathing tube and the doctor was ecstatic to report that despite one lung being small (as we already knew) her lungs are in wonderful shape and he saw no abnormalities. YEAH GO SOPHIE!

Other exciting news is that her mustles are really staying loose due to her moving alot. Noel one of her physical therapists is really pleased and amazed about how much she moves and how well her mustles are doing. She is our little fighter...we think she wants to come home as much as we do.

On a daily weekly basis we can see a ton of different nurses who get to take care of our Sophia. Just so you have an idea of what we mean here are the names of a few, Emily, Allison, Erin, Ann, Melissa, Jessica, Noel, Diedra. That dosent include all of the APN's, RT's and the whole CDH Team. The CDH Team alone can have over 13 people that includes doctors and nurses and several others.

Although her surgery was delayed on Wednesday we really think the repair should happen tomorrow so please once again keep her in your thoughts and prayers.

Surgery moved to Friday

Surgery has be moved to Friday, details about Friday are still sketchy. No need to worry though Sophia is doing well the doctors just can't seem to get their schedules figured out and like to keep us on a bit of a yo yo.

Surgery Tomorrow

Today was a BIG day for Sophia. She got to meet Aunt Sarah again today for a longer time (she met her briefly last night). I also got to hold her for the first time. When you have a little one with this amount of support it is quite an ordeal to actually be able to hold her. Sophia really loved being held and we got to snuggle for about an hour. Sophia also got to enjoy listening to our favorite musician Brett Mitchell via Patrick's Ipod. We believe she likes listening to him as much as we do, her heart rate stayed really stable when she was listening to Brett.
Now for the news that you have all been waiting for. About two hours ago we got a call from the Hospital. They are scheduling Sophia for surgery for tomorrow. She will have the surgery some time after 9 a.m. We don't have an exact time. We will let you all know how it went as soon as we can. Thank you all for following us through all of this...We appreciate each and every one of you.

Tummy time

Hurry up and wait is one of the themes that we becoming well accustomed to. Last friday we were told that the doctors wanted to wait through the weekend to see if Sophia's rates remained favorable. Today we found out that her rates did stay favorable despite the small amount of rocky-ness we saw this weekend. Patrick and I anxiously awaited rounds today. When they finally came through they told us that she was doing good and that they were waiting to hear back how her Echo turned out and that they'd get back to us. A few hours later we visited the NICU again and we were told that her pressures stayed favorable but it would probably later in the week that she received her repair and that they had a surgery on another patient tomorrow so we are waiting again. The good thing about waiting is that she gets stronger everyday and with each surgery they do (this will be their 3rd since we've been here) the more practice they have and the better her surgery will go.

When we visited her this time the occupational therapist had visited and worked with her and had her rest happily on her tummy.

Important night

Sophia overall has has a good weekend. It is very important that she has a good night tonight. Tomorrow she will have an Echo Cardiogram that will once again check the hypertension levels in her lungs. If they stayed the same or decreased the doctors will most likely schedule her surgery some time this week, possibly as soon as Tuesday.

I see you

After a little bit of a rough evening last night, Little Miss Sophia settled down again and had a very good night and day today. Uncle Scot, Aunt Sherri and Cousin Max came to visit. We found out though that they only let siblings visit so Max and I entertained ourselves in the Library playing PBS Kids games on the Internet. Max did very well with the change in plans. At one point Patrick and I traded spots so I could get a picture of Uncle Scot and Aunt Sherri visiting with Sophie.

The last few days Sophie had tried to open up her eyes to see us. Today She really got her eyes open on Patrick and I. We were quietly chatting and She opened her eyes and looked at me. When Patrick started to talk she looked over at him and then closed her eyes. It was as if she was saying "I see you". I had the opportunity to get a photo of her eyes open just a little (of course I had the flash off so I did not hurt her little eyes). It's the little things like her opening her eyes and looking at us that really makes the time we spend with her special.

After their visit with Sophia we gave the Trio a tour of the Ronald McDonald house. They were as amazed with it as we are. Being that they stayed in one when they had Max they really enjoyed seeing and comparing the two Houses. The Cincinnati House was huge in comparison to the house they stayed in...in the Chicago land area. We also took them to the Zoo. It was wonderful to see them and of course their trip included a visit to the Lego Store.

After we bid our company adue we headed up to see Sophie again. She was sleeping soooo sound and looked extremely happy and comfortable. It is really good to see her so content (which she is most of the time) after seeing her look so uncomfortable, like she did for a while yesterday. Not to worry she was ok health wise she just needed some attention from the nurse to make her more comfortable.

Snug as a bug in a rug

a good night again

Sophia had another good night and was visited by mam maw, paw paw and Liam again today. Liam is such a silly little boy. There was a temperpedic mattress on the floor and Liam decided it was his place to hang out while visiting Sophia. He called it his puppy mat.

Liam, Maw Maw and Paw Paw headed back home around 3 today. Uncle Scot, Sherri and Max came into Cincinnati around 5:30 today and will see Sophia some time tomorrow.

Bath, Blood pressure and Bass?

Sophia got her first real bath today and I got to help! Up to this point Sophia had only been cleaned with disposable bath wipes and her nurse Emily believed that it would be really good to bathe our little Sophia and she said she would wait until I was around to assist. While we did not throw out little Sophia in a bath tub we did give her a sponge bath right in her bed. There were certain areas we could not get wet but for the most part she was washed toe to head. You can see from the picture that we even lathered up her hair. I would have to say that having her hair washed by far was her favorite part. While washing her lower body she made some really rotten faces but when I lathered up her precious little head she was very serene. She even liked having her hair rinsed. Just after we finished washing her and the Nurses were in mid bed change she decided to poop (almost in the nurses hand). That's our little stinker!

Today Sophia also had a head ultrasound and echo cardiogram. The results of both of them were awesome! The Echo Cardiogram is how they measure her Pulmonary Hypertension (blood pressure in her lungs). Last we had heard she was at 107% and usually they wait until the Hypertension is under 80%. Today when they measured her hypertension was down to 70%. They now believe that she might have her surgery early next week, as long as she stays good over the weekend. This is both very exciting and scary news.

Liam is still doing very well staying with us here at "Ronald's House" as he says it. Every time he walks by the Ronald McDonald statue sitting on a bench outside of the house he runs up to Ronald and gives him a big hug and says thank you Ronald. It's amazing that even our 2 1/2 year old can see how wonderful this place truly is. I can't blame him though, there is a toy room where you can walk through the wall to get in it (a.k.a a special circle kids entrance in the wall), Our Room is across from the "ICE" (a kids theater that is shaped like a pond), not to mention all of the kind volunteers and staff who Liam believes are friends put there just for him.

Paw Paw came today and got to meet his new little granddaughter. Paw Paw , Maw maw and Liam will head back to Michigan tomorrow and will visit again soon. Sophia told me she really enjoyed seeing all of them and she told me she will re coop from her surgery quickly so they can come back real soon!

Sophia after her bath.

Liam at Bass Pro shop

Another good day

I am happy to report another good day for Sophia. Today the doctors decided to turn down her respirator and remove a medicine from her regime. So far she seems to be adjusting to the new settings just fine. Sophia is a really good patient and the nurses really seem to like working with her. We now have two primary nurses (Day and Night) which is really good both for her and for us. Having two set nurses will provide a steady care for her and a face that we recognize every time we go in.
Liam once again got to see Sophia and did very well with it. We have learned that there is an Internet connection in the Library and when Liam gets antsy I take him into the Library and play on the PBS Kids website with him.

a good night for Sophia

Sophia had a really good night last night. For the first time in 7 days she had a tweak free night. It was as if she was showing her brother that she was going to be ok. Liam got to see her again and is beginning to become a little more comfortable with it all. Daddy Patrick showed Liam that it was ok to gently touch Sophia's fingers. When Liam reached out and touched her she moved her fingers and made Liam giggle. He does really well for about 1/2 an hour and then starts to get antsy as any 2 year old would.

We also had the opportunity to visit the Cincinnati Zoo with Liam. Although he did like seeing the Animals and almost being eatten by a snake... Riding the Choo Choo was his favorite part.

Big Day for Sophia

Our strong little Sophia had a big day today, it started when she was being a little to active and breathing against her vent and also did not seem to be potting as she was. She had to once again have some settings tweaked and her folley Catheder was put back in. Not to worry she is still doing well. These are the just part of the little daily tweaks that I have
spoken of before. After the cath was placed back in she pottied as she should and she was given medicine to relax her to allow the vent to do the breathing for her (as it should). When I arrived in the morning to see her she looks super comfortable in her z-flo nest. This afternoon Sophia had her first visitors. Liam and Maw Maw got to meet her. Liam was extremely concerned and to make him feel more comfortable daddy showed him she was ok by gently giving her a fist bump. If you could only see Liam's concerned face, a 2 1/2 year old should never have to make that kind of face. Sophia also gave Liam a little present which really helped break the ice. He did so good visiting and the nurses loved his antics. Maw Maw also got to meet Sophie and saw how strong she is and said that Sophia is even more beautiful in person then in the pictures.

To celebrate Patrick thought it would be cool to take Liam to Molly Malones. Liam Had a great time dancing to the music and eating big hot pretzels.

Sophia wishes you Happy Easter

Last night while we were all tucked in the Easter Bunny made his rounds. He even stopped at the NICU and left little Sophia some really cute bunny slippers. It was so cool to walk in and see her all nestled up in her Z-flo nest, with a pretty new yellow bed covering wearing bunny slippers. We finished decking her out with a little bunny that is just the perfect size for her to snuggle with and that really awesome knitted hat that our friend Margaret made for her.

While we were visiting Sophia we got the good news that they were removing her catheter. She has been potty-ing really good and had been peeing around the cath a few days so today they removed it! Yippee! She also had her vent changed to something called a By-vent and she really seems to like it. Last night the nurse also got pacifiers out for Sophie to add positive stimulation and try and retain her sucking motions. Due to all of the tubes in their mouths early in life CDH babies can have a very hard time eating or having the desire to suck. The nurses say "they do allot of bad things to their mouths" i.e.the tubes so any positive stimulation is a good thing. I have helped do mouth care on Sophia, the nurse suctions her mouth and gets the really yummy goobers out and I have gotten to use a sponge on a stick to freshen up her mouth with a minty mouthwash solution. Afterwards I shine up her lips with some chapstick. I told Patrick that our little girl already wears more make-up then I do.

Her color is returning to a more normal color today as well. She had been a little yellow the past few day but she was not at a level that concerned the doctors and nurses. We keep teasing that she is on a baby tanning bed or that she just had a residual sun tan from beginning her life inside me when we vacationed in Mexico.

In all seriousness though she is doing well and the nurses love that she doesn't seem to mind much being gently moved around for evaluations. We have been told that some CDH babies really don't like being messed with. Every day we learn something new in the NICU and we are very grateful to be here with the kind and caring doctors and nurses that are taking care of her.

We are truley blessed ths Easter and Sophie, Patrick and I wish you all the very same.

These are a few of my favorite things....

There are so many wonderful things in life like Liam...Sophia...My family and friends, sunshine, spring time breeze, smiles from strangers, doing the doggie poo dance from Drop Dead Fred..well you get my point I think.
Every once in a while you run across something that isnt so spendid. I really think I found one of those things on Tuesday and it has been haunting me ever since. My new adversary is Petocin. While I do appreciate that my adversary did expedite my labor and assisted with the birth of our beautiful Sophia...I am not so sure that I really needed a whole nother IV bag of the pain juice after she arrived. During labor I can understand being uncomfortable but having your body think it needs to have small obnoxious contractions throughout the day over 5 days later frankly is just plain dumb. I know it is just my uterus shrinking back to normal size but I am sure it is that my adversary is making them feel so nice. The end really does justify the means but I just can resist placing Petocin on my "BAD GUY" list.

Sophia's first toy

Today we brought Sophia the toy that Liam picked out for her before she was born. It's funny how in the store the toy looked so little and when we brought it to her it looked so big.

They moved her breathing tubes today . The new placement looks a lot more comfortable for her. We could actually see her making smiling faces at us. It might have just been her moving her mouth and tongue but we like to think she was smiling.

Her First Bow

little hands little feet

With each passing day things change at the RCNIC. It's kind of like a scavenger hunt, hmm what will we find missing today? Today we could actually see one of Sophie's feet, free and clear of any medical device. Also when we are there it seems like she is bonding more with us. She pushes against our hands with her feet and really holds on to your finger. Each day we have been present for CDH Rounds, the doctors are really positive and say that her pulmonary hypertension will be down to acceptable levels in a week to 10 days. When that is in check then she'll be ready for her surgery. She has done very well and has been relatively stable during these first few days, just needing little tweaks to help her stay in check. We hope to continue to report these types of minor tweaks for the next few days... The saying in the RCNIC is that they want to string together a bunch of uneventful days... We like the thought of that too.

RCNIC Waltz

We are quickly learning the RCNIC waltz. As you can see from the picture there is not a whole lot of lounge space around in this area. The picture below is Sophia's current bedroom. While visiting there is basically room to stand beside her bed. You quickly learn when you need to move and or get out of the way for the nursing staff. We have a really wonderful Nurse named Jessica taking care of Sophia. At this point they are really trying to learn what keeps Sophia's vitals in check, doing little adjustments each day getting her one step healthier. We were present yesterday when the doctors came through on CDH rounds. There were 13 doctors/nurses huddled around discussing Sophia. Lots and lots of numbers were discussed, but overall they were very positive. Dr Limm said that he believed that she could be ready for her repair as soon as two weeks. OK, while this seems like a long time in all reality it's not. I think about it like this... She was born at 38 weeks through induction. If she went to her due date which was April 13, she would have been the full 40 weeks. So basically if she keeps progressing positively she will get her repair about the time she was suppose to stop baking. While it is hard to see our little one in this photo, she is sleeping in the bed, surrounded by a really neat comfy material called z-flow.

All Powerfull Amazon Warriors!

As you have read Sophia Huber has arrived, and she is quite cute if I don't say so myself! She came into this world with great gusto and might! Last we spoke we were heading to the hospital at 6 am for the scheduled induction. Well as you can see we made it there, but the inside scoop that you might not know is that I walked to the Hospital (about 5-6 blocks). I figured there was no harm in it since I was not in labor and thought it might even help labor come sooner. Not to bore you with details but we checked in at 6 a.m. By 7 a.m. I was all registered and waiting, Around 8a.m my friend Patosin was starting to be administered. Around 11 I told Patrick that if he indeed wanted to go get lunch that would be the time. Little did I even know at the time that I was correct. Around 12-12:30 they broke my water and then the games began! One nurse kept saying that she did not trust me enough to leave the bedside and that was a really good idea since our little Sophie decided she was done baking at 1:36 p.m. With in 30 seconds of life she tried to cry, (which is very good for children with CDH), With in one minute of life she was ventilated and her journey to recovery had begun. Things at this point are obviously a little sketchy in my mind but if I remember right I had about 4-5 doctors and or nurses around me and she had easily 6-10 around her. I did not realize why the room was so big until I saw how many people were in it. I did get to see Sophie before they whisked her off to the University hospital NICU and they also wheeled her by when she was ready to be transferred to Children's RCNIC.
Less then 24 hours after her arrival I was checked out of University Hospital and on my way to see her (The Hospital would not let me walk out of the hospital but when I reached the door I kindly thanked the transport team and walked 2 blocks to get some Chipotle for lunch then walked the 5-6 blocks back to Children's to see her. Here are the Pict's of her proud parents.