Pulminary Hypertension at 8 months

Well a big hi there and hello to everyone! Another month has passed and we have been having a blast! We are happy to report that after 8 months that Sophia's Pulmonary Hypertension is now at a normal level. We had an appointment at our Cardiologist in Saginaw in November and they told us that her levels were near normal and our trip to Cincinnati confirmed that is was indeed at a normal level. This means that Sophia is on her way to being weaned off her Sildentifil. Yeah one less medicine! While November had been a good month overall Sophia has had a few rough weeks, comparatively speaking. In October her overall pukyness had almost ceased. She'd have whole days that she would not get sick. This was not the case in November She had about two weeks where she got sick again some times every feeding of the day and even at one of the night feedings which hasn't really every happened before. We believe this was caused by: A. getting the first phase of the flu shot and B. Cutting teeth. Sophia was a teeth cutting monster she got two lower and two upper in the same week and a half. Since the teeth have come in her pukyness has returned to a more normal level (once or twice a day usually due to her "wet burps"). Despite the formula explosions Sophia remained quite happy and content. While she was having a harder time with her formula we held off on working on oral feedings, but have resumed them as well. She is doing well chewing on mum mum crackers (also known as rice rusks) she also chews on baby wheels at meal time. Over thanksgiving she tried chewing on bread, Had a little bit of cheese and really enjoyed tasting whipped cream. Although she is not taking full meals at this point by mouth she is indeed moving forward. Last night she actually ate 5 little puffs (both chewed and swallowed them). Sophia is also up to multi grain cereal and we've been told she can try stage two foods and introduce meats to her diet.

November was full of more firsts for Sophia. She has teeth as you have already heard. She got to meet and spend time with her cool cousins Bjorn and Britta at thanksgiving. She attended her first kids birthday parties(besides Liams), for her cousin Justin and Lilly one of our friends daughters. She and her brother also visited the Saginaw Children's Museum over veterans day.

December 1st marked our return to Cincinnati for her 6 month since discharge check up. Our 6 hour car ride without kids turns into a 9 hour ride when stopping for feedings and letting the kids stretch here legs but we arrived in Cincy around 5 p.m. We were able to once again stay at the Ronald McDonald house. It was so wonderful to see all of the staff again and I believe they were as excited to see us as we were to see them. It was like stopping in at a relatives house.

Sophia's appointments were on December 2nd, she had a chest x-ray, a sedated Echo-cardiogram, EKG and appointment at the High Risk Clinic. All went well. As I stated earlier the cardiology department reported that her pulmonary hypertension was at a normal level and they would call our Cardiologist in Saginaw to try to wean her off her medicine sooner then the Saginaw Dr. planned.

We talked with Dr Haberman and Jackie the Nutritionist at the High risk Clinic. They were very pleased with Sophia although they thought that she needed to gain more weight, so they upped her calories for her formula. They also Gave us a sample of a different formula to try to see if she could come off of the Ellocare and onto a more normal over the counter formula. So far so good on the conversion. When discussing her weight they explained that she will always be a person who will need a higher caloric intake due to her working harder to breath then typical kids. She'll be able to have the four course meal and keep a more slender figure because she burns more calories simply by working a little harder to breath. They also looked at her chest (ribcage)which has an depression in the center of it. We thought that the dip was due to where they tied the hernia repair off during surgery. They told us that it is very common in CDH kids and it was actually caused by the cartilage in that area being soft as a baby. With her working harder to breath and probably pulling her shoulders up to help her breath it caused the depression. They just told us to watch to see if it gets any worse. They told us they typically it doesn't worsen but it can cause bras to fit funny in the future and that later on in life if it is indeed a problem that cosmetic surgery can be preformed to make it be more typical. They also told us that she should have a yearly chest x-ray to watch for Scoliosis. It's a funny thing going to these clinics, they really lay out all of the possible problems that are minutely possible and can sometimes get you to worrying about things that most likely will not occur, but I guess it is good in the long run to be prepared with the knowledge. In knowing all the possibilities we know how truly blessed we are for her to be in such good shape.

Sophia was also able to see Jessica and Deidra, two of our wonderful nurses from the RCNIC. It was so good to see them again and they were both amazed with how big Sophia is and how well she was doing. It is truly amazing the bond that Sophia formed with her nurses. She had not seen them for 6 months and you could tell that she recognized them. We too felt that bond, seeing them was like seeing long lost friends. We can't wait until our next appointment in 6 months to see them again and hopefully see others that we missed this visit!

One thing we kept thinking when going for the visit and staying in the McDonald house was if we would see other CDH parents that were there when we were 6 months ago. We might not have seen them but we saw their stories still up on their room doors and their names on the in and out check in board. Seeing this once again reminded us how truly blessed we are in so many ways and our thoughts and prayers go out to all of those who have little ones who need medical attention.

Sophia did get to have fun on the trip as well. She racked up some more firsts this visit. We all went to the Newport Aquarium and saw fish and sharks, not to mention Santa Scuba diving! She chewed on crust at Deweys Pizza (yum) and hung out with daddy in his favorite Irish pub, Molly Malones, not once but twice this trip. Sophie and Liam tried to have an ol'fashion Irish brawl while there but were laughing to hard to actually throw a punch. The kids also got to go the Children's Museum in Cincy where She watched her brother and daddy get rained on by balls in the ball pit.

November and early December were a hoot, Lets see what fun the rest of December brings!

Seven month Sophie!

October has been a fun month for Sophia. She went to two pumpkin farms, and went trick or treating at several different places not to mention that she finally got enrolled in the ESA's Early On program and has a new therapist who visits her once a week to assist us in getting Sophie to want to eat with her mouth. At this Point Sophia is still seeing a speech therapist as well. Her wonderful physical therapist has told us that she is releasing Sophia from therapy because Sophie is exactly where she needs to be with her gross motor skills. Of course if Sophie ever needs more assistance we can go back to her again. Sophie is rolling and scooting all over the living room. She also does this interesting pose where she lifts her back legs up and balances on her rib cage with her legs completely in the air. Its wild to see, the only thing I can really relate it to is break dancing or a pose that a gymnast would do on a balance beam. Sophia is moving forward on eating and has for the most part not thrown up as much as in the past months. She has whole days that she does not throw up. It seems that when she does get sick that is has to do with gas, we call them wet burps. The down side to them is that Liam seems to have a weaker gag reflex since Sophie throws up all of the time. When she gets sick, and he is close he now makes a gag sound and grabs his mouth like he is going to get sick too. I think that's why we call them wet burps...to try and get him to be OK with what is going on. While back in the RCNIC I had mentioned that it looked like Sophie was getting teeth. I think it might have appeared that way due to some of the medicines that she was on, and we have not seen any teeth since then until lately. She looks to be getting a lower tooth and that would explain why she puts everything in her mouth now. Oral aversion? I think not, or not anymore at least. Toys, her g-tube extension, the syringe that we put her food in, my fingers and her feet are just a few of the things that routinely can be found in her mouth. Sophie continues to grow. She is super tall standing towering above other babies at 28.5 inches and weighing almost 16 pounds. She definitely is going to be a show off too. When we put her in her Jessie the Cowgirl outfit she just smiled and it almost looked like she was doing a little strut in her duds.
Health wise she is doing really well. We took her to the Developmental Assessment Center in Saginaw and they really did not have much to say other then keep up the good work. They mentioned that her fine motor skills could use a little more help, but in all reality what 7 month old doesn't need work on their fine motor skills? The real test of how she is doing will be what they say when we go back for our check up in Cincinnati Dec 1-4. We excitedly talk about the trip, hoping that Sophie and Liam will do good on the 6 hour trip down there.

Happy Six Months Sophie!

Wow what a difference a month can make! Not that Sophia was not doing well before but she has made quite a few steps this months. She can now roll from her tummy to her back. She also is quite good at sitting with very little support and she is doing it with out getting sick. Just last month we were hesitant to have her sit due to getting sick but now she is holding her own! She still needs support but she can now sit for several seconds with out being held. One of the most exciting things she id doing is that she is showing interest in food. Although she is not eating volumes at a time she is tasting foods and seems to really like pears and also doesn't mind green beans. We are beginning to work with a OT (occupational therapist) from Midland ESA and one short visit from her helped move Sophia leaps and bounds (for Sophia) eating wise. Sometimes it is the simple things that you don't think about that help the most. The OT suggested simply to put Sophia in a highchair and put towels around her for support. The theory behind this is that having the body supported will "ready" Sophia's mouth muscles. So far so good she is now taking a few teaspoons at a sitting instead of a few tastes. Sophia is also showing a lot of signs that she is ready to eat, she is sucking on her pacifier more around the clock. There are times where she actually attacks the pacifier. Sophia also seems to be managing her formula through her g-tube better. She seems to be getting sick less often and when she does get sick it seems to be related to having gas or going poop.

Sophia also has started to enjoy time standing in her exersausers. She will play for a half an hour or more at a time. She plays so hard she wears herself out.

This month was full of gatherings, Sophia got to meet, Aunt Cindy and Uncle Glen from Wisconsin, Stefan from Germany, Uncle Lyle from Arizona and Uncle Ron to name a few. Sophia also helped Liam celebrate his 3rd birthday!

Great strides forward this month Sophia keep up the great work!

Happy Five Months Sophia!

Today marks another milestone for Sophia. Sophia has now been home from Cincinnati just as long as she stayed in the RCNIC in Cincinnati and I think she has loved every moment home despite having acid reflux/getting sick issues. This weekend she dressed to the hilt as a fairy and attended the Michigan Renaissance Festival. She was a huge hit, steeling the show once again. She was even noticed by the Queen herself and she received a very touching blessing from the Queen. It was almost like the Queen sensed that Sophia had been through a lot. Sophia also enjoyed watching her brother eat a huge turkey leg at the "REN" fair. It was so big that mommy and daddy had to help and they were all full as well before it was all gone. Maw Maw and Paw Paw also went to the fair, it was really warm but we all had a really good time.

Liam and Sophia also helped build their new Playscape in the backyard the past two weekends. Although Sophia is too little for most of it now she'll enjoy it a lot when she is older.

Health wise Sophia is doing well. Last week she weighed in at 14.8. Her Prevacid has been upped again to a 15mg tab a day (two 1/2 tab doses). It is our hopes that the Prevacid will help her stop throwing up. She is seeming to do better as she gets used to the new dosage.

She still is not eating by mouth. She has no interest in the bottle and really does not have much interest in rice cereal off a spoon but we keep trying. On a daily basis I remember back to when one of our wonderful nurses said eating is the hardest part. Although for most of us eating seems simple... eating is one of the most complex things we as humans do. Sophia will indeed get there it will just take a little time.

Bye bye for now

Has it really been a month?

It is hard to believe that it has been a month since my last post. So much has happened and and both Liam and Sophia have had to once again get use to new things. Lets see where do we start? Hmm how about where I left off. On July 9th she got her malencot g-tube changed to a button or peg. We have learned a lot in that month about how to care for the button and how to success fully vent her. Since we have been home from Cincy Sophia has had a lot of trouble with her feedings. She has had days where she throws up with every feeding once if not twice. This really was a shock to us because they told us with the Nissen that she could not throw up. She has also been refluxing as well, so she is back on her anti reflux medicine Prevacid.She seems to be tolerating her feeds a little better and there are some times where she can get through a whole feed with out throwing up, that is if we vent her appropriately. When I say venting I mean attaching a tube to her button and placing a syringe on it to allow gas and or formula to be pushed back out. We routinely say she has a built in Jacuzzi. She is currently getting 90 ml of Formula every 3 hours, which is only 5ml more then she came home on, We had to drop her formula back to 75 shortly after we came home, to help her tolerate the feeds and then to 65ML when she had her g-tube switched. We have been working her back up to the appropriate amount of formula for her age and weight, We are supposed to increase her formula intake by 5ml a week. As far as Oral feedings go she is some times willing to accept the bottle in her mouth and will occasionally suck on it briefly. She simply seems to have a hard time with the Suck swallow breath rhythm. Although she is not eating via bottle she is showing positive signs with oral stimulation. She routinely sucks on her hands to self sooth her self, she will also some times accept two different pacifiers (the soothie and the Nuk). She has also done a few tastes of Rice cereal. She doesn't gobble it up but she has swallowed some of it. She is now able to support her head and sits up with support. She is trying really hard to do good with tummy time although that too makes her throw up from time to time. All of her therapists stress the importance of tummy time. Sophia is also getting active she can lay on the floor and spin herself in a circle and she now interacts with toys. She really is a sweet baby, she really only cries if her tummy is bothering her. Sophia has gotten to do allot of neat things in the last month as well, she has listened to her favorite band, Brett Mitchell and the Giant Ghost twice in outdoor concerts since she came home, she watched her brother play at chucky cheeses and kokomos, she;s had stroller rides on the rail trail while her brother biked and also watched him splash around at the local splash pad. Sophia has also gotten to see, Aunt Pat and Aunt Sarah, Great Grandma Corky and Great Grandma Huber, She attended the Huber family reunion and got to meet Aunt Sarah's brothers and dad, she;s hung out with Uncle Scot, Aunt Sherri and Max not to mention that she is really getting to know Maw Maw and Paw Paw. Sophia is for the first time and Liam is once again, spending their Days at Maw Maw a Paw Paw's house because I had to return to work. I went back on July 26th. It has been an adjustment for everyone, and although I wish I could be there taking care of the kids instead of at work I could not think of a better place for them. Sophia still averages 3-4 appointments a week. She has in home, nurse and speech therapy visits. She goes to a physical therapist once a week and usually sees her Pediatrician once a month along with the Cardiologist once a month. She also attended the High Risk Clinic at Covenant in Saginaw in July, She met with a Physical Therapist, a nutritionist, and a neo-natologist. Overall they said she was doing well and also gave me a few areas to work on such as retraining her tummy muscles. She is still doing very very well for CDH baby and has come a long way and the road to eating orally is a long one but we have every faith in her that she'll get there.