Heart News

Yesterday I went to All Children's to see Kyle and I met his new doctor, Dr. Figueroa. Kyle's Echo-Cardiograph the day before had shown that Kyle had calcification on his pulmonary arteries. Pulmonary Artery Calcification is so rare that they have to send Kyle's enzymes overseas to Europe for testing! As soon as I got home, I looked up his condition on Google and the few references that had to do with children, rather than adult dialysis patients, also referenced Twin-to-Twin Transfusion Syndrome (TTTS). The information I found says that the "receipient twin" in TTTS (which was Kyle) may develop this condition because of the overload on their heart in utero. One of the references to this condition mentioned a surgery that was done on one child at 4 months of age that was successful in treating the Pulmonary Artery Calcification so I guess there's at least there's treatment options. The doctor did say that this is a very serious condition, though, especially combined with his lung problems.

On the happier side, while I was there, Kyle was asleep but he lifted his hand with the IV in it up to his mouth and started licking his IV... It was so funny to watch! The nurse tried giving him a pacifier (the smallest pacifier you'll ever see) but he didn't want it. As soon as she took the pacifier away again, Kyle lifted his hand and started licking the IV again!

Water Play

Earlier today, Hannah and I went to the Oldsmar "Sprayground", a children's water park especially built for younger children. They have water spraying from everywhere. There were over a dozen other children there, all within a couple years of Hannah's age.

Now that I'm going to be working nights and staying home days with Hannah, I feel like I can be a real "stay-at-home mom" and do the "stay-at-home mom" thing. I watched Hannah have a blast playing with other children and getting soaking wet and talking with other moms.

I think Hannah and I will probably visit the "Sprayground" many more times. The best part was, it was free! So we can go as many times as the weather allows.

Back to Work

Last week I got a call from Barbara at Nielsen Media Research. She scheduled me for an assessment to see if I could do the job and explained that their hours fluctuate based on the TV sweeps schedule but they have nights and weekends available so I wouldn't have to put Hannah (or Kyle, later on) in daycare.

Saturday I went to the assessment. The office I would be working at is in Dunedin near Main Street so I expected that it would take 20 minutes or so to get there. It didn't even take 10 minutes! The assessment included a basic listening/typing assessment, a recorded speaking assessment and a personality inventory. It took about an hour and then they said the recruiter would call me with the results.

Sure enough, I just got a call again from Barbara and she said that I'm hired! I start training September 11th at 5:45 PM. After training, I will be working Wednesday - Saturday, 6 PM - Midnight. I'm sure that the schedule will take some getting used to but I'm sure that I'll do okay.

Better and Better

Kyle's improving every day. The nurse practitioner said that he was doing quite well without the Vecuronium now and his oxygen has been staying down at around 36-38% and his gas levels and saturation levels have been staying good. Kyle's lung X-rays have also been looking better.

I met with Social Security Administration and applied for SSI Child Disability for Kyle. They said he's a definite approval because his birth weight was below 1199 grams (2 lbs, 10 oz). Under SSI, he can get SSI Medicaid and as long as he's still in the hospital, he qualifies regardless of mine and Chris' income. This is really good news since I had been worried that if I got a job we wouldn't qualify for Medicaid anymore and wouldn't be able to afford Kyle's care in the NICU. This way, I can get a job and still have Kyle's medical bills covered. I'm hoping I can find a weekend or night job so that I don't have to put Hannah back in daycare - especially since daycare is going to be a challenge once Kyle's discharged. Daycare's hard to find for average newborns, let alone preemie newborns.

My mom and I went to a job fair Monday and I applied for a nights/weekend position for Nielsen Media Research and gave my resume to a couple of other companies that had nights/weekend positions available. I also put in my name with Randstad Staffing again and my mom and I are signed up for a temp job with them to work in the primaries election call center September 5th.

Looking Good at a Month Old

Chris and I went to see Kyle last night (8/19) and he was looking good. They had weaned him off the Vecuronium to see how he'd do without it and so he was moving around and opening his eyes. His oxygen was down to 38% and his saturation levels were staying up around the 80%'s and 90%'s. The Vecuronium has caused him to swell up a little but he looked less swollen when we went last night and he's starting to look more like a little baby and less like a little old man.

Hannah went with us and as soon as we got to the parking lot at All Children's, she started saying "Baby Kyle". She knew where we were going.

Chris' birthday is today (8/20). He had some guys over Friday night to play video games and we all had fun.

Minor Improvement

The only update I have is that Kyle is slightly improved. He still needs quite a bit of help from the ventilator but he's making progress in the right direction at least.

Long Night

Last night (Thursday) we got a call from Kyle's nurse practitioner around 6:00pm saying that Kyle had a rough night but was doing much better and his little black toes were looking much improved.

Around 7:30, my parents called and said that they were just leaving All Children's and the nurse had seemed concerned about Kyle's weight or something but they couldn't give them any information.

Around 8:30, one of the night doctors called and said that Kyle had taken a turn for the worse and if Chris and I could come down to the hospital, it might be a good idea. They had put him on the high frequency ventillator again and were having to keep it at 100% and Kyle's gas levels were of concern. I called my parents and asked them to come watch Hannah so that we could head down to All Children's.

As soon as I hung up from talking to my parents, I got another call from the night doctor and she said they were going to administer Hydrocortisone and would most likely put Kyle back on the Vecuronium to paralyze him again.

Chris and I rushed down to the hospital and were confused when we came into the NICU. Kyle's incubator was not in it's place. In fact, there was no incubator in that spot. They had moved Kyle across the room to make more room around another incubator where another family was having a worse night than us. I recognized all the signs. They had set up curtains around the incubator for privacy for the family, sent in the chaplain, the couple were emotional and clearly heartbroken and the IV pole had numerous syringes of medicines like Dopamine and other medications I recognized from Eric's last days.

Dr. Wadhawan, the neonatologist on staff, came to speak with us and made it clear that Kyle was very sick and his lungs were not doing well. He mentioned the possibility of using the Dexamethasone (a corticosteroid) and asked if Dr. Brooks had discussed with us the potential risks of using this kind of steroid. We let him know that we were willing to take the risk if it may improve Kyle's lungs and keep him with us so they administered the Dexamethasone in place of the Hydrocortisone. They had stopped the Vecuronium for a while so Kyle wasn't moving much but his eyes were wide open when we got there. He was looking around with his big, bright eyes trying to see everything that was happening.

Dr. Wadhawan let us know that the steroids would take anywhere from 24-48 hours to show any change so we were basically just waiting it out. Chris had to leave around 11:00pm to go home so that he could work this morning so his mom gave him a ride home so that I could stay with Kyle.

Once Chris got home, my parents came down to the hospital and my dad left my mom with me for support and let me know that he would arrange for Caleb to watch Hannah in the morning when Chris left for work so there wouldn't be a rush on me heading home in the morning.

It was a long night of watching and waiting. Seeing as Kyle was on the Vecuronium again, there wasn't a lot to watch except numbers. The nurse said that we wanted the ventillator % to go down and the saturation % to stay up.

Mom and I took several breaks in the cafeteria and family waiting room and each time we returned Kyle was doing a little better and the family across from us was doing worse. I felt a wave of sympathy when I saw them tearfully carry their small baby out of the NICU with their minister beside them and I nearly cried when I saw the staff clearing the space where the incubator had been. I knew what they were going through and I felt a selfish joy that we were not in the same situation. Though things were touch and go with Kyle, he was stable and slowly improving.

Around 4:00am, Kyle's ventillator was down to 68% and his saturation was up to 94% and the nurse said his gas levels were good so Mom and I went to the family waiting room with a couple of pillows and blankets and got a couple of hours of uncomfortable napping in. We got up at 6:00am to check on Kyle but I had forgotten that the NICU doesn't allow visitors during their shift changes from 6-7:00 so we had to wait another hour.

While we waited, we talked to a woman in the family waiting room who had a 2 1/2 year old granddaughter (Vanya) in the hospital for chronic heart problems. I was thankful that my own 2 1/2 year old did not have any severe health problems and never had.

After 7:00, we returned to the NICU. Kyle was back up to 94% on the ventillator and down to 84% on saturation. The nurse said that it was mostly due to the hands-on she had just done with him. We got to talk to Dr. Wadhawan again and he said that, though Kyle was still sick and not out of the woods yet, he was doing better than the night before and only time would tell if the steroids would help improve his condition.

That was enough to let me leave for home without too much guilt or worry. I was still concerned about Kyle's condition but exhaustion and back ache were calling me back home to bed. There was nothing I could do at the hospital anyway. I told the nurses to call me with any changes and headed home.

Unfortunately, we still don't have any good news to report yet but we don't have any bad news either. We're just waiting. Please continue to keep us in prayer and I will update as soon as we know more.

Murphy's Law

Wednesday afternoon (8/9), I was headed to All Children's with Hannah in the car with me. Just as I was coming to where I-275 branches off to I-175, I heard a noise and realized that our driver's side front tire had gone flat. I pulled over and felt helpless. I know how to change a tire but I knew that we didn't have a spare because our spare had been stolen with the other wheels back on June 4th and I also wasn't supposed to lift that much weight yet. It was only 3:00 in the afternoon so I knew that almost everyone I knew was at work for another two hours.

Luckily, Steve Croft and his lovely fiance, Leilei, were out and about and were able to come to my rescue. They came and got me and Hannah and took the flat tire off the car and we went to Bob Lee's Tires in St. Petersburg. The person who replaced the tire recommended that I keep the flat and bring it back to Hubcap City, where we had gotten the tires back on June 5th because whoever mounted this tire had split it in the mounting process so it was their error.

I got a used tire to do until I can get by Hubcap City and Croft, Leilei, Hannah and I all headed back to our car with a short stop by Dairy Inn for root beer floats and ice cream cones.

Big Sister, Hannah

I went with my parents Saturday to Lake Wales/Winter Haven to pick up Hannah from my cousins. Hannah was very sweet to watch with her cousins. She would come in from playing with "the boys" (my cousin Jenny's sons, Quinton and Chance, and my cousin Marcy's foster boys, Kyle, Cory and Harley) and would just point out the door at them and simply say, "The boys". That was her little tattling technique. She wouldn't say what they did or why she was upset. She'd just tell us who to blame and then run out to play with them some more. Whenever she says Chance's name, she changes her tone to a coaxing little song... "Cha-ance".

Sunday morning, we went to church for the first time since the C-section. It was hard at times since there were some people who still didn't know about our loss but it felt good to be in church again.



After church, we took Hannah to see Kyle in the NICU. She seemed a little confused at first but then she looked down at Kyle from Chris' arms and said, "Hi, Baby Kyle" and when we left she said, "Bye, Kyle" and skipped down the hall saying, "Big SISTER!" just like on her Big Sister Dora DVD.

She went with me to the NICU a couple more times during the week, each time looking at Kyle from a step stool through the incubator and saying, "Hi, Baby Kyle".

Baby's First Kiss

Last night (8/3), I went with my parents to visit Kyle. When we arrived, Kyle was positioned on his belly, looking quite comfortable. He kept moving his legs around like he was trying to crawl away. It was so good to see him wiggling around. We had really good timing for showing up because the nurse, Amber, was just getting ready to do "hands on" with Kyle, which is where the nurse changes the diaper and does stuff like suctioning and weighing. She lifted the top of the incubator and we were able to take some good pictures of him while she took care of him. Kyle opened his eyes wide open while Amber changed his tiny little diaper (see picture below), trying very hard to see what she was doing. Before she could quite get the clean diaper on, our little comedian started peeing. Kyle's color looks really good and he's doing better on the regular ventillator. Before we left, the nurse asked if I'd like her to take the side of the ventillator down so I could give Kyle a kiss! Definitely YES! So I gave Kyle his first kiss before saying goodnight.

Kyle's Lungs

Kyle's been keeping everyone on their toes the past couple of days. Yesterday I went to visit Kyle at the NICU and met his new neonatologist, Dr. Sharon Brooks.

Monday afternoon, Dr. Brooks put Kyle on a special high frequency ventillator because his lungs were not showing improvement. The high frequency ventillator shakes Kyle slightly allowing his lungs to more easily take in the oxygen. When Chris went to see him Monday night, he mentioned that Kyle kept moving his mouth like he was trying to get the breathing tube out.

According to the neonatologist, late Monday night Kyle had been rejecting the new ventillator so much that they had put him on a medication called Vecuronium to paralyze him. Since this medication may cause pain, they also began him on Fentanyl for the pain. So when I went to see Kyle yesterday he was completely still, not so much as twitching. It was very strange to see him like that but his monitors showed a very even heartbeat and blood pressure which was reassuring to see.

They were concerned that when they put Kyle on the high frequency ventillator it seemed to effect his kidney function and he was not producing as much urine as he should. They put on a foley cathetar to monitor his urine output. They were also concerned that he seemed to be fighting some kind of infection so they began administering an antibiotic just in case and took several cultures to check for infection.

The doctor was most concerned, though, about Kyle's lungs. She showed me his chest X-rays since day one. His more recent X-rays show a "honeycomb" pattern to his lungs which is a sign of http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35017. She explained that the light spots on Kyle's lungs (which were in patches all over) were air pockets of the lungs that were not functioning. She said that the ventillator was meant to help correct this problem and improve his lungs but he was rejecting the ventillator.

I asked Dr. Brooks if there was any medication to treat this lung problem and she said that Coricosteroids have been used in the past for treatment of lung disease in premature infants with great success. However, as of a year and a half ago, they stopped using steroids on infants except as a last resort. They found connections between the steroids treatments and later neurological problems. Though most cases were minor, there was a possible link between the steroids treatments and certain cases of Cerebral Palsy. Dr. Brooks offered me literature on the risks of Corticosteroids and said that if Kyle's lungs did not improve on the ventillator within 48 hours, she would offer the option of using the steroids for treatment.

This afternoon, I visited Kyle again and spoke to the nurse practitioner on duty. Kyle had continued to reject the high frequency ventillator and was having difficulty with his kidneys as a result so they took him off the high frequency ventillator and put him back on the regular ventillator. His saturation levels improved and they were able to bring his ventillator down to 30 breaths per minute (which is much better than he was doing just before they switched him). They also took him off the Vecuronium but he was still not moving when I went to see him because it was draining from his system. His kidney function had already resumed normal activity and he was peeing like a champ. They got his labs back and one culture showed positive for Staph Epidermis but another culture showed negative for the same infection so they were continuing the antibiotics just in case and they took more cultures. If he does have an infection, the antibiotics should be able to treat it. His head ultrasound also showed normal which means that the use of Heparin previously did not cause any bleeding on the brain. So, basically, Kyle was looking really bad yesterday but is looking much better today!

We still may need to resort to the steroid treatments at a later time but at this point Kyle is responding well to the ventillator.