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Updates!

I have not updated in over a month, mostly because of all the things that had to be done and kept us so busy.

We made a week long trip to Disney World end of April. A much needed respite. Avy enjoyed it immensely and it was something we needed. I got pics with all the characters too, and my most favorite one is Minnie kissing my tummy, now the little one has had his taste of Disney world and we talk about how in 3 years we will take him back and I sure do hope it happens.

After that it has been series of Doctor Appointments.

April 30th, 2012: We went and met with the Pediatric Surgeons and the Neonatologist at UVA in preparation of the journey ahead of us. We first met with Dr. Eugene Mcgaren, who is one of the three Pediatric Surgeons at UVA. He was very nice. He explained clearly to use their philosophy, their methods of management, surgery and care. His colleagues and him between them have more than 45 years of experience.  He also explained that surgery is the most straightforward part of the whole ordeal. The two biggest things that take a CDH baby away is Pulmonary Hypoplasia ** and Pulmonary Hypertension **. The extent of these two cannot be judged till the baby is actually born. He also said that some babies whose condition seems grave in utero seems to do very well after birth while some who do not have such a bad prognosis do very bad. He also stated that they prefer an actual incision instead of the new laser methods as it leads to less re-herniation. In final words of encouragement he said that he has a lot of 20 plus year old patients who are leading very normal lives.

After that we were off to see the NICU unit and the Neonatologist. This is the part of the visit I was dreading the most. Nothing can ever prepare you for the sight of little ones in there. We were shown around by a lovely Dr. Paget- Brown. She showed where our little A would likely be and explained the whole process, the hard parts of it especially. It is still hard for me to accept that he would not be eating anything till his surgery is done (typically surgery is 4-7 days after birth, and then some recovery) and that I have to pump from day 1. They also explained in detail what to expect and I was just happy that I felt like he will be in safe hands. I also realized on how helpless I will feel not being able to care for my little one and that a whole host of other people will. Ups and downs dominate my life now.

I am still very glad we did this, as it gave us a real time peek into what life is going to be for a while. After the appointments we drove around looking for some accommodations, got on the wait list at the Ronald Mcdonald House (a affordable place to stay for parents with a sick kid at the hospital). We got back, a bit clearer in the head and a bit heavy hearted.

May 8, 2012:  We had an ultrasound with the High risk specialist to see how Little A is progressing and I was 24 weeks and 4 days. Every time I lie down on that table an uneasy feelings creeps over me, a feeling that something is not right and it happened again. The ultrasound took longer than usual. Then we got the news, that Little A is not measuring as much as he should. He was measuring about 12 days behind and they were concerned. They said it could be because his stomach was in his chest and hence his abdomen was measuring small. Nevertheless they have to follow up closely. I was asked to come back in 2 weeks. Now this would not be an issue if he was always a bit behind. But when I got pregnant he was measuring a day behind, then he got 3 days behind, then 7 days, and now 12 days and I felt my heart sinking at the thought that he may stop growing before we even had a chance to fight. So I was told to rest for an hour or two every evening, lying down on my left side and eat better. I took it very seriously, as this was me fighting for him. I lay on my side all evening. I found ways to play with Avy, we watched movies, read books and shared that time as best as we can. He understood…I told him that I had to do it to make his little brother stronger. Soon he started asking why I was not lying down if I was doing something else that evening. We tried to pass the 2 weeks hoping for better news at the next appointment.

May 24, 2012: This was it, the moment of truth. As I lay there on the ultrasound table I was more nervous than ever. I could not take any more bad news. She started measuring and you could see the measurements for various parts of the body on the screen. I was 26 weeks and 6 days and most of it seemed to read 26 plus weeks. I was a little hopeful. Then we met with the Doctor and got the best news so far. He had GROWN. He was measuring 26 weeks and 3 days, so we are only 3 days behind. Yayyy!!! All that rest paid off. I had gained 5 pounds in 2 weeks and I was really hoping it was just him and his growth spurt. They also checked my fluid level and it was right in the range a 17. Mother of CDH babies have issues sometimes with excess fluid, as their babies are not able to swallow the amniotic fluid like normal babies do, due to their stomach position. Higher fluid levels means pre term labor which adds to the complication. As of now, I do not have that issue. So he said to come back in 3 weeks as he was impressed with the growth of Littlest A.

So now I am waiting for another week to pass before I can know the status and will update then.

 

** Pulmonary HypoplasiaPulmonary hypoplasia is incomplete development of the lungs, resulting in an abnormally low number or size of bronchopulmonary segments or alveoli. A congenital malformation, it most often occurs secondary to other fetal abnormalities that interfere with normal development of the lungs. Pulmonary hypoplasia is a common cause of neonatal death

** Pulmonary Hypertension: In medicine, pulmonary hypertension (PH) is an increase in blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion. Pulmonary hypertension can be a severe disease with a markedly decreased exercise tolerance and heart failure.

 

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2 comments on “Updates!

  1. Reading other CDH blogs always brings back memories. I also took a trip to Disney while pregnant and made the same 3-year promise!!

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