Lots of News!

It's been a while since the last update. Between keeping house, watching Hannah, visiting Kyle and working nights, I've been very busy.

Thursday (9/21), my mom watched Hannah so I could see Kyle again. I wasn't able to hold him again because I ran out of time but I was thrilled to see that for the first time ever, Kyle was wearing clothes!!! The little preemie size onesie is still a little large for him but he looked adorable in it.


Friday (9/22), they began the second course of steroids for Kyle. I didn't visit him that day because I took Hannah to Chuck-E-Cheese with the mom group from church.


Sunday (9/24) afternoon , Chris and I went to All Children's to visit Kyle and we both got a chance to hold him! The nurses gave us the good news that, since Kyle was doing so well, they would be extubating him (taking the ventilator tube out) soon.

Monday (9/25), I met with a couple of other stay at home moms at the Sprayground. As with Friday, it was nice to talk to other mothers and let Hannah play with other children. That night, I had an additional training class at work. One of my fellow trainees, Raneasha, commented that we wouldn't be working the same shift after that day so we decided to go out. We ended up going to Bricktown54, a dance club on McMullen-Booth Rd that I've been wanting to go to since I first heard about it! We had a blast!



Tuesday (9/26), my mom watched Hannah so I could go see Kyle and get to hold him while I was there. Just when I was about to leave my mom's house, I got a call from All Children's Hospital that they had just extubated him that morning! The nurse practitioner said that I might not be able to hold him since he was just taken off the ventilator but that I could at least help with the hands-on like changing his diaper. When I got to the hospital, though, the nurse said that he had been doing so well off the ventilator that I could hold him after all! He now only had the tiny tube for feeding in his mouth and a CPAP (Continuous Positive Airway Pressure) on his nose. The CPAP looks like a little plastic elephant trunk.


Wednesday (9/27), I decided to take Hannah to the beach. She had a blast playing in the sand and waves and just when I was packing up our stuff to leave, Reginald Roundtree and the Channel 10 News crew were walking along the shore, filming!

That night I didn't have to work since they had my schedule wrong so I called up Raneasha to see if she wanted to go to Gulfport Casino's Wednesday Swing Night. We stayed until they kicked us out learning better swing dancing and a little lindy hop from a veteran swing dancer there. Heading back to the car, we heard calypso music and followed it to a tiny bar around the corner where they were doing limbo and karaoke! No, I did not sing karaoke.

Thursday (9/28), I went to see and hold Kyle again while my mom watched Hannah again. Kyle was still doing very well off the ventilator with the CPAP and when he cries, you can hear a little bit of a noise, though still barely audible.



Yesterday (9/29), I was a little lazy and just hung around the house with Hannah. My mom got a call from Nielsen saying that she was hired and would start training October 9th.

Earlier today, I went to see Kyle again and he's now getting clean air using the normal tubes that stick up the nose. He's not too fond of it - he keeps pulling it out of his nose but he's doing well on it. He was wide-eyed the whole time I held him, staring at me in awe. It was wonderful! The nurses say that now he likes being held and responds well to it so he should be held as often as possible!

More Visiting With Kyle

Yesterday (9/20), I went again to visit Kyle. Chris was home with an upset stomach so he watched Hannah while I was gone.

The nurse told me that I wouldn't be able to hold Kyle that day because he had just gotten his vaccinations earlier that morning and was not too happy about them. They had also given him Tylenol for the pain which gave him a nice little smile most of the time but any time he tried kicking his feet, his expression would quickly change since the shots had been done in his feet.

The nurse also told me that Kyle's ventillator settings were up again because Tuesday night he had decided to yank his ventillator tube out, himself. He decided after the tube was out that he didn't like it out. They had re-intubated him and he was back down to 39% by the time I showed up around Noon.

Dr. Wadhawan came over to talk to me while I was there and said that if they do the course of steroid treatments again, it would most likely start Friday and may continue for longer than the previous treatment course. He also said that he had reviewed the literature I had found and thought it likely that Kyle had the Pulmonary Artery Calcification linked to Twin-to-Twin Transfusion Syndrome. It was so nice to hear that from a professional. I had been pretty sure, myself, but I'm not a doctor.

Rock-A-Bye Baby

Monday afternoon, I went to All Children's while my mom watched Hannah for me. Kyle was having a good day and the nurse said that I could finally hold him!!! I had the nurse take pictures of me holding him for the first time (I will post the pictures to this post as soon as I can get the digital camera to give them up).

While I held him, his saturation levels stayed at a good level the whole time. Kyle gave me rewarding little smiles and a couple of times opened his eyes just long enough to peek at his new surroundings. I asked the nurse if he could get a little bit of breast milk on his tongue so he could actually taste it. He usually doesn't get to actually taste the milk since it's given to him through his feeding tube. He gave a sweet little smile after tasting his first bit of breast milk.

The nurse practitioner said that they might not need to do the steroid treatment after all since Kyle had gone down on his ventilator settings over the weekend and had gotten down to 22% oxygen.

Before leaving, I signed the authorizations for Kyle's vaccines. The nurse practitioner said that they try to do vaccines at two months old - even for preemies - unless there is neurological damage.

New Doctor

Last Friday evening (9/15), while I was at work, my parents watched Hannah so that Chris could go to All Children's and meet with the new neonatologist, Dr. Wadhawan. Dr. Wadhawan is the same doctor who began the administration of Kyle's steroid treatment back in August (see post: Long Night). He explained that he was not convinced that what Kyle had was the Infantile Arterial Calcification (IAC) and did not feel that there was much point to doing the genetic testing. Chris gave the doctor a print out of the literature I had found online about Pulmonary Artery Calcification (PAC) and its link to Twin-to-Twin Transfusion Syndrome(TTTS) and the doctor said he would look into more information about those cases.

Dr. Wadhawan is more concerned about Kyle's lungs. Kyle has shown great improvement since August but not as much as hoped. He has some scarring on his lungs which may have adverse effects for the rest of his life and as long as he is on the ventilator, he's at risk for even more scarring. Dr. Wadhawan has asked us to consider another course of steroid treatments with Dexamethasone to treat the lung disease.

I feel that this doctor's concerns are more aligned with my own concerns.

Heigh ho, heigh ho...

I started training for my new job at Neilsen Media Research last night. This week and next I'll be working Mon-Fri 6:15p-10:45p for training and after that, I'll be working Wed-Sat 6:00p-Midnight.

I'm so used to being the baby of the group but not in this group. In my training group, I'm one of the older women. We have several in our group who are still in high school or else just out of high school, and my trainer is only about 21 years old. Most of the other trainees have worked in a call center before. I, on the other hand, have only worked in one other call center and that was for this month's primary election! I'm certain that I can do this, though.

Growing Boy

Friday afternoon my parents watched Hannah so that I could go visit Kyle at All Children's. I got to the NICU just as the nurse, Stephanie, was starting "hands-on" with him. She let me massage his back with a tiny little vibrator to loosen up the fluids in his lungs for suctioning and a little while later, she let me change his little diaper. It was wonderful to have this little bit of participation in his care.

Kyle is up to 3 pounds, 4 ounces. He's getting 7ml of breastmilk every hour! He's started smiling (so far, only when I put the camera away) and he was able to move his head a tiny bit on his own. His oxygen is still pretty high but he's growing and getting a little more cooperative.

Infantile Arterial Calcification?

Last Thursday afternoon, I got a call from Dr. Figeroa about Kyle's heart condition. He said that he believes Kyle may have Infantile Arterial Calcification (IAC) - a genetic disorder rarely found. He told me of a test case in Australia where they tried an experimental treatment and had success recently (see link above). However, in order to confirm whether that is what Kyle has, we would have to send samples of Chris', Kyle's and my own blood to a Dr. Frank Rutsch in Germany for testing. The testing is so specialized and experimental that we would have to pay a very large fee for the testing and we would not get the results back for 10-12 months. If the tests came back positive for IAC, there is a medication that has been used ONCE in the treatment of IAC that Dr. Figeroa would want us to consider even though it would mean jumping through hoops since it's so experimental and has never been used on an infant so premature. They don't even know if the medication would prove helpful since it has only been used once before.

Chris and I have decided against testing for this disorder. We love Kyle very much and would find a way to pay the cost if we felt that some good would come of it. However, for one thing, literature I've found on this disorder says those who have it almost never live past 6 months (which means that we wouldn't even have the tests back by the time he died). Also, considering there have been no known cases of this GENETIC disorder anywhere else in either of our families and the references mainly to CORONARY arteries rather than pulmonary arteries in the literature I've found, we do not believe there is enough evidence that Kyle might have this condition. Plus, the information I've found regarding Pulmonary Artery Calcification, linking it to recipient twins in Twin-to-Twin Transfusion Syndrome, seems to sound more likely in Kyle's case.