Sunday, February 22, 2009

Grow baby grow

Alyssa's health Assesment:

Alyssa came home to us in July only on Tri-Vit-sol and a NG tube. The NG tube was pulled within a week. She was primarily bottle fed my expressed breastmilk 90cc's every 3-4 hours until late September. She also was breastfeeding a little. Due to a cold and concerns over micro-aspiration (which ended up really being low reflux) oral feeds were stopped. We began re-introducing the bottle and breastfeeding in early December ( she doesn't aspirate). She currently breastfeeds/ or bottle feeds at every feeding along with her tube feeding. She gets about 360cc's daily not counting what she eats orally. Her nutritive suck continues to get stronger.

Phyiscally Alyssa has low tone but is increasing her strength as each month passes. She receives early intervention services, phyiscal therapy weekly and occupational therapy twice a month. We recently acquired a Bumbo seat. She loves it! As you'll see in many pictures we've put her boppy to good use, it is nice for her to now have another way to sit and see the world. The Bumbo offers good support for her at the moment. Alyssa is still learning to hold her head up well, her head still lags to the back some. The Bumbo's high back helps her not to drop her head back too much.

Medications: Tri-Vi_Sol/Iron 1ml daily; Omepraole (Prilosec) 4ml daily; PolyCal modular Caloric formula 1 scoop added to every 5 ounces of breastmilk.

Immunizations: Alyssa began receiving typical infant immunizations at 3 months and is up to date. In addition she receives a monthly Synagist shot for RSV during the winter months (5 in total) and has had the Flu vaccine. Alyssa has tolerated her immunizations well. After the last round that included the flu vaccine, Alyssa had 3-4 episodes of vomiting and was more irritable. However she recovered nicely.

Cardiology: Alyssa does not need endocarditic prophylaxis (medication to protect her heart during medical procedures) and has been cleared. She was born with two small VSD’s and an ASD; however by 2 months 2 had closed. The remaining VSD appeared as though it was closing and if it shouldn’t it is so small that it would not affect her overall health in any way.

Ophthalmology: Alyssa is farsighted which is causing her eyes to cross. Crossing of the eyes is also a common feature for T18 babies. Alyssa has been prescribed and is now wearing glasses. If the glasses do not improve her sight line, her eyes will be repaired by surgery.

Audiology: Alyssa failed her newborn hearing screening on her left side at birth. She is followed by an ENT. To date she has not had any ear infections. She has very small ear canals. Her most recent audiology test noted that she has moderate hearing loss bilaterally. She can hear high pitched sounds (like a flute)normally, but drum sounds or our voices is affected by this hearing loss. We are in the process of determining a course of action.

Pulmonology: After having 4 colds, Alyssa continues to demonstrate her ability to well manage mucus, coughing and sneezing without the need for antibiotics. She has small bilateral diaphragmic eventration; which basically means her diaphragm doesn’t inflate properly. It can inhibit her ability to inflate her lungs, but so far this has not been a problem. Alyssa's oxygen saturation level is near perfect when awake or lying down usually staying at 98% to 100%. When sleeping it does vary more~ we wonder if this due to her snoring??

Neurological: Alyssa has not had any recorded apnea episodes. She doesn't seem to have any issues in regards to seizures.

Orthopedic: We think Alyssa has scoliosis which is common for T18 babies. We are hoping to get x-rays of her hips and back to have a clear idea of if and how her back/hips are affected.

Gastroenterology/Nutrition: Alyssa has duodenum inversum; which means her duodem travels in the opposite direction then which it should. Again this hasn’t been a problem for her. She is scheduled to have surgery for the placement of a G-tube in April. She takes medication to control some lower end reflux, without the medication her breathing sounds noisy and wet~ this type of reflux does not cause her to vomit but did make us think she was micro aspirating. A swallowing study was completed back in Novemeber and she does not aspirate.

Genetics: Alyssa’s geneticist would like to obtain a tissue sample when she has surgery in April to confirm whether or not she is full T18. We are just curious, in the end the findings won't make a difference to us. We are learning that T18 has a wide range of anomalies and every child is affected in different ways regardless of the T18 classification.

Other: Wilms tumor is common for T18 babies and these babies should be checked every 6 months for this cancer. Their AFP levels should aalso have a 6 month drawl. Thankfully Alyssa’s scans and bloodwork have been clear to date.

All smiles

(I've had a case of bloggers excuses, sorry! Note that if there is "no news, that’s good news”.) Alyssa is 7 months old! What a blessing!!We clearly see that we as a family are being prayed for and the Lord is good! I won't be blogging as much but I will do better at providing updates. Thank you for your continued prayers for our family and Alyssa specifically. Continue to pray for her to remain "healthy" and for good outcomes with her upcoming surgeries. The ins and outs of why I have been absent from writing is more simple than complex I’m spent. Now that we have a feeding pump that is working properly at night for Alyssa, I am able to get to bed at a reasonable time and even with the checks at night I can get a decent night’s sleep. However Alyssa is a baby first of all so aside from any medical issues there are still sleepless or interrupted nights. The day seems to slip by so quickly...We are either out and about at appointments, or home with appointments. When we have a quiet day I try to catch up on phone calls, paperwork or projects that have been put aside (there’s a long list of those). Since I’m not a robot there are days when I just want to “veg-out”. Everyday though as Alyssa tolerates it we do her massaging and exercises, in total we do at least 2 hours. I also have to have cuddle time with her, just letting her sleep on my chest, while I listen and feel her breathe. We can’t forget that we are a family a six and not two so there are many duties for myself, Ed and the older kids. Some days it’s a struggle to turn off the TV and connect with the world and other days I’m scratching items of the to do list like it’s poison ivy!
One key thing that has changed is counting the days that Alyssa has been here with us. I am not counting each day, rather I suppose an exercise in faith I moved to the more typical method of measuring her life in weeks or months. I give thanks everyday for her life and acknowledge the gift of this time. It’s important to trust in the Lord’s sovereignty; counting each day while a great reminder of how special her time is…places limits on God’s ability. God’s grace broadens more than a measure of any day and the symbolism of counting the days came to diminish that for me.

Alyssa at 7 months is now 22 inches long and 11lbs. 9 ounces! She is laughing, smiling, cooing, and mimicking sounds. She’s taken to sucking her thumb, and I’ve found her doing so at night many times. She is getting stronger; she kicks her legs, holds her head up well and is grasping at things with her hands. What an awesome 7 months it has been.