So, the half way point in my pregnancy has finally arrived! The second trimester is treating me pretty well and feeling the baby kick and move around is truly awesome! So far, the pregnancy has been great--including less morning sickness than with W! However, I'm gaining weight and showing different than before--my love handles have expanded even more and I hate it!
Yesterday, we had our 20 week ultrasound and met the Maternal Fetal Medicine doctor for high-risk pregnancies. The ultrasound was very exciting and we found out the gender--GIRL!!!! Now my mind is racing with nursery decor, bedding, names, etc! Although we'll re-still use a lot of Wade's equipment and things, I'm still excited about seeing some pink in our house!
Since we're not doing an amniocentesis test to check for the SDS gene, the only thing the high-risk doctor can do is keep an eye out for IUGR (inter-uterine growth restriction) with this baby. We aren't sure if Wade was IUGR because of SDS, for a reason created by me, or if something went wrong with the pregnancy or development of the placenta. The measurements taken of Baby Girl in the ultrasound showed measurements right on track for 20 weeks. That was a big sigh of relief to hear that the development is normal so far. However, we'll repeat another ultrasound in 6 weeks to check development and growth again. I'm so glad that with this pregnancy, we'll be more cautious and actually do more than one ultrasound! Still praying for a healthy baby! She sure does look cute already!
I feel like I haven't made a post in forever! Sorry about that, I promise to keep posting! W hasn't had many serious things going on, but there are a few updates to mention:
- W's stools were still really loose on the pancreatic enzymes so the GI doctor finally bumped up the dosage. As of July, he now gets three capsules before he drinks a bottle of Pediasure and two capsules before a meal.
- After about two weeks of the enzyme increase, I told his doctor that his stools have not improved. So the GI doctor explained that sometimes the enzymes' effectiveness can be maximized if the child also takes a proton-pump inhibitor medication (usually prescribed for acid reflux). So, W has been trying out Prilosec to see if his stools improve. The compounded medication is nasty (and I'm talking NASTY because I've tried it) and trying to get W to take the medication was a nightmare. For the first several days, Adam and I struggled with keeping the the medicine in W's mouth from injecting it in his mouth with the syringe. Then, I tried putting it in applesauce, then chocolate pudding, but still no luck with W actually taking the medicine. Finally, I found a fruit juice that masks the nasty flavor of the medication and W is finally able to take his Prilosec. And, I'm happy to say that his stools have finally improved. He actually creates formed stools now!! Hopefully, since we're noticing a change in his stools, we can also notice a change in weight gain? (We've only been waiting for him to gain weight for about 7 months now!)
- We did go to the pediatrician in early August because W was cranky and pulling at his ears. Luckily, no ear infection was present! But we did find out that his right ear tube that was still holding on is now working its way out! I'm frustrated because his left ear tube began working its way out within 10 days of surgery and now his right tube started working its way out 6 months later! The pediatrician ordered a hearing test to make sure W still has good hearing with those tubes coming out. Finally, a happy note with his ears because he passed the hearing test with flying colors!
- Over the weekend, W pinched his finger in a sand bucket and it formed a blood blister. I instantly worried about it turning into an infection and wouldn't you know it--it's infected! I put antibiotic ointment on it tonight but I'm calling the doctor tomorrow. Darn infections!
Two Fridays ago, W and I headed up to St. Louis for two follow-up appointments with his specialists at Children's. First we saw his Hematologist and there were two big topics of discussion--Neupogen dosing and baby #2's cord blood. W's doctor received dosing information from the Severe Chronic Neutropenia International Registry for Neupogen that differed from her dosing. She's waiting on the literature/studies that based their decisions but she basically told us that we have two options when it comes to dosing W's Neupogen: 1) current dose that's given on MWF (her suggestion), or 2) smaller dose given every day of the week (SCNIR's suggestion). I found some Neupogen curves online that demonstrate the difference in dosing and how it affects ANC counts, risk of infection, and bone pain. Although the MWF dose is currently working, I can see the benefits for giving Neupogen daily. However, that's 7 pokes for W in one week, rather than 3. Any advice from other SDS-ers?
The second topic of discussion with W's Hematologist was the various possibilities since I'm expecting baby #2. Like any genetic disorder, the likelihood of baby #2 having SDS is 25%. So, leaving a 75% chance that the baby will not be affected by SDS, we want to save the cord blood for Wade, IF he were to ever need a bone marrow/stem cell transplant and IF baby #2 has the same HLA match for Wade. Once again, a 25% chance exists that baby #2 would have the same HLA as Wade, making it a good match for W to receive the cord blood if needed. I asked the doctor about a cord blood registry that she knew of that banked cord blood privately for a sibling donor. She told me about the St. Louis Cord Blood Registry, a public bank. Although this is a public cord blood bank, they also do what is called a directed donation, meaning that the cord blood from baby #2 will be saved in our family's name only. They are no time constraints on storing the cord blood and no fees in collecting or storing the cord blood. The only time fees would come into play would be if we get the cord blood out specifically for Wade. However, if baby #2 is not an HLA match with Wade or if Wade were to not need a transplant, we can always donate the cord blood back into the "public" part of the bank to be used by anyone else who may need it.
After Hematology, we saw W's GI doctor. I had some questions regarding W's lack of weight gain in the last six months (total gain of 6 oz in six months = not good enough). We are still waiting for a food log analysis from W's dietitian, but I can already bet that W's pancreatic enzyme dosing needs to be increased. I believe he's eating more than what the enzymes can digest, resulting in loose stools and no weight gain. His current dose is 1 capsule for solid food and 2 capsules for a bottle of Pediasure. The GI doctor also thinks that W's enzyme dose needs to be increased, but he would first like to see the food log analysis. Because I'm me, I asked the question, "What if increasing his enzymes still won't help him gain weight?" and his reply was, "Well, if that's the case after optimizing his enzyme dose, then I would refer you to endocrinology, because we would have exhausted the possibilities on the GI and metabolic side of things." So, that's still a possibility if increasing enzymes still won't help W gain weight. SDS-ers: Is this common to have an Endo specialist? What is their role with the treatment of SDS?
So, after a morning full of labs, appointments, and questions/answers, my brain is now overflowing with "what if's" and endless possibilities that I have to wait out....and I'm not a very patient person!
