Tyler went to the pediatrician’s Monday for his well-child checkup and he is doing great!
Our little chubster weighed in at 8 lbs. 0 oz!! The doctor said he is doing everything
that healthy babies are supposed to do—eating, sleeping, crying, peeing and pooping.
Unfortunately, poor little guy has come down with a bit of a cold so there’s been less sleeping and more crying these last two nights. We still think he’s a perfect angel though......I mean look at him—how could you not?!

The week in review

Tyler has been home for over a week now and what a busy (and exhausting) week it’s been! Here’s a recap of what we’ve been up to….

Monday
--Mike went back to work. We were both sad that he spent his whole two week vacation in the hospital and that he only got a weekend at home with Tyler before he had to go back to work. I was also nervous about taking care of Tyler without Mike’s support. To help ease the transition, my mom and dad came down from Manteno. They helped out with the cooking and cleaning and helped take care of Tyler so I could catch a couple hours to nap here and there.
--Tyler had his first pediatrician’s appointment. He weighed in at 7 lbs. 3 oz. (up from 6 lbs. 15 oz. when he discharged from the hospital on Friday). The doctor said he looked very healthy upon physical examination.
--I got a call from the genetic counselor at the Children’s Hospital in Peoria. She said the geneticist wanted us to bring Tyler in for an appointment Thursday to discuss the borderline abnormal fatty acid deficiency on his newborn screening. They drew some additional labs at the end of Tyler’s hospitalization and the geneticist wanted to go over those results as well.

Tuesday
--We kind of celebrated Halloween a few days belated by dressing Tyler in one of his two Halloween onesies. I never did get around to getting him a great big pumpkin to pose next to but we still got a couple cute pictures.
Tyler and his Mummy

"I love my Mummy!"

--My mom and dad babysat Tuesday evening so Mike and I could get away for a dinner alone. Granted we only went to Chipolte and Target to pick up diapers, but it was nice to have some much needed alone time.


Wednesday
--More rest throughout the day to try to catch up on all that sleep I lost. I was somewhat successful!

Thursday
--We took Tyler to the geneticist in Peoria. It’s all very complicated and I don’t even know that I have the details right but basically Tyler had a borderline abnormal result on his newborn screening for a fatty acid deficiency called very long-chain acyl-coenzyme A dehydrogenase deficiency (VLCAD). Basically it’s a disorder that prevents the body from converting fat into energy during times of prolonged fasting or illness. Symptoms typically present themselves during infancy and include low blood sugar, lethargy and muscle weakness. None of the pediatric hospitalists acted too concerned with the result and our pediatrician said it’s not too uncommon for a premature baby to have a borderline abnormal result. However, they explained that because Tyler did suffer from complications early in life, it was a good idea to get some additional testing done to rule out this disorder sooner than later. So while Tyler was at the hospital, they drew blood to repeat the newborn screening and they also took extra samples for a diagnostic workup. At our appointment, the geneticist informed us that the blood sample drawn for the repeat newborn screening was insufficient and basically gave us no new information (great…my confidence in the health care industry is really going down the tubes at this point). However the diagnostic lab results indicated that Tyler’s levels had normalized for this VLCAD condition but that another level was elevated for a similar condition. So they repeated that particular lab (poor guy had to have more blood drawn) and they are also going to do some DNA testing to determine if Tyler has any mutations in the genes known to cause these disorders. We should get the results back within a month. The good news is the geneticist did not act too overly concerned (he agreed that he looked very healthy upon physical examination) and he did not recommend any sort of medical intervention at this time; just to keep feeding him every 3-4 hours to prevent periods of prolonged fasting. Our little chunkster had already gained 6 oz. in 3 days—up to 7 lbs. 9 oz. at that appointment!

--Grandma and Grandpa Breclaw went back to Manteno but we want to thank them for coming and helping out so much! Tyler had lots of fun spending some quality time with Grandma and Grandpa!

"Thanks Grandma and Grandpa! I miss you already!"

Friday

--Tyler had a little trouble keeping his temperature up after he peed on himself 3 times within a 5 minute period, resulting in an impromptu bath. I noticed he felt a little cold afterwards and took his temperature to find he was right at 97.5 (the pediatrician wanted us to call if it got below 97.5). The good news was our little peanut was able to warm up to 98.6 within 15 minutes of being bundled up and held tight! It gave us quite the little scare (déjà vu anyone?!) but we were relieved that Tyler could regulate his temperature on his own.
--Alyssa and Emma came down to meet Tyler! Emma seemed to have lots of fun exploring a new house and pulled out every one of Tyler’s toys (the boy DOES have rattles and rubber duckies galore)! I hadn’t seen Emma since her first birthday party a couple months back and it was super cool seeing her so independent and curious and exploratory! And of course I always enjoy Alyssa’s company and appreciate her support! And Tyler was super excited because Emma was nice enough to let him borrow a couple of her favorite playthings (her Bumbo, activity mat and tummy time mat)! Thanks Emma!

The First of Many Firsts

Tyler has been doing great in his first 48-hours of being back home. He hasn’t had any problems keeping his temperature up so we decided to be daring and take him for his first walk! It was a beautiful fall day so we bundled up our little bundle of joy and took him for a stroll with Spice. By the way, Spice is doing great with getting used to her new friend. We were really nervous about them meeting one another because Spice can be a bit jealous and she’s definitely an attention hog. She didn’t really have enough time to understand what was going on the first time around but today she really started warming up to him. Anyway, once we got back from our walk, we gave Tyler his first bath at home (he had several baths at the hospital but this was the first one at home). He really seemed to enjoy the one here much more than the ones at the hospital--but who can blame him with those scratchy hospital towels! The best part is we took his temperature before and after the walk and bath and he stayed right around 99 degrees! We are so proud of how well he is doing!

Guess Who's Back?!?!

Tyler is home again!!! He was discharged around 7:00 p.m. last night after receiving his final dose of IV antibiotics. Mom was a little nervous about his homecoming (x2) but he handled it great. He seems to be feeling much better and is back to his calm and super sweet self again! We are so happy to have him home and healthy again!

As much as we don't want to remember the events of the last week and a half, we took pictures of the course of events so that we could recall the struggles we faced as a family. I'm really proud of how Mike and I handled the extreme levels of stress, fear and anxiety. The on-going support of our family and friends really helped us get through what was probably the toughest time we've ever endured together. Thank you to all of those who lent us your strength and love and for keeping us in your thoughts and prayers!
"Don't worry about me, Mom and Dad--I'll just stay warm in here for now!"

"I'm cute even when I have wires all over my body!" "I graduated to a jail cell--I mean a crib!"

"Can you even see my head with all these blankets wrapped around me?!" Big stretch

"Now I'm getting comfy!"

Resting peacefully on the car ride home

Tyler Update, Vol. 3

Here is the latest on Tyler's condition:

He has remained out of the Isolette since Friday morning at 8:00 a.m., meaning we are on day 5 of maintaining his temperature. The nurses actually took the Isolette out of the room yesterday so they are pretty confident that he is going to keep his temperature up within normal limits for the rest of his hospital stay. He is now sleeping in a gown with one loosely wrapped blanket and his temperature has been consistent in the 98.0-99.0 range. Unfortunately, his little veins are having a hard time keeping the IVs in. He is on IV site number 4 now. It's heart-breaking to know that they are poking him so much and that he is so uncomfortable. He is still scheduled to receive his last dosage of IV antibiotics on Friday at 6:00 p.m. Mike and I are hoping to be able to take him home Friday night rather than Saturday. Please continue to keep us in your thoughts and prayers as we find the strength to make it through these LONG last couple of days and the courage to take him home with confidence!

Hospital Pictures

Check out Tyler's pictures taken at the hospital by clicking on this link:

http://www.our365.com/newbornportraits/babydetail.aspx?birthid=40c30b35-3777-4f81-be79-23b25b3334d1&babyid=5b8028c8-354c-4287-876f-bd20b2f2d1ad

We didn't want to open his eyes so the nurse was sticking her finger in his mouth to wake him up and the pictures were taken between cries!

Tyler Update

Most of the people who check our blog consistently probably already know that Tyler was admitted to the the Children's Hospital of Illinois at OSF St. Francis in Peoria, IL. However, I've decided to outline the details, to update our friends and family, and also to have a diary of the events of this last week.

Tuesday, October 21
Tyler seemed extra fussy throughout the morning. Granted I hadn't known him for very long at that point but his demeanor in his first 3 days of life was very calm. At around 3:00 p.m., I was trying to put him in his bassinet so I could catch a nap but I noticed that every time I laid him down, he screamed his lungs out. When I would pick him up, he would stop. After this went on 2 or 3 times, I decided to try to utilize his calming vibrating chair for the first time. When I un-swaddled him from his blanket, I noticed his hands and feet were blue. I bundled him up in an extra blanket and a knit hat and held him close, thinking I could just warm him up. Mike came home 5 or 10 minutes later and told me to take his temperature. We did and found that it was 94.6 degrees. We called the pediatrician right away to report the reading. They told us to come in right away. We frantically got Tyler into his car seat and rushed to the office. In the car on the way there, Tyler became unresponsive. I decided to take him out of his car seat in an attempt to do CPR, at which point he started to cry. When we got to the pediatrician's office, the Dr. said he wanted him to go to the ER via ambulance. The ER was crazy and I was a wreck. We thought we lost our little boy. The ER Dr. decided to have him air-lifted to the Children's Hospital in Peoria so he could get advanced care. Tyler was admitted to the Pediatric Intensive Care Unit around 7:00 Tuesday evening. He was placed on IV antibiotics and was put on a warming bed in efforts to get his temperature up (it was still only 94 degrees). Overnight, they tried to wean him off the warming bed but were unsuccessful. The good news was that his vital signs were very good.

Wednesday, October 22
Tyler had been off the warming bed and was maintaining his temperature for long enough to warrant a transfer to the Intermediate level of pediatric care. After about 4 hours of being there without a warming bed, his temperature dropped again, this time to 96 degrees. We had to argue with the Dr. to get him into an Isolette/incubator. Once there, his temperature stabilized and was within normal limits. We heard a couple of different opinions from a couple of different doctors regarding the cause of Tyler's hypothermia. One doctor claimed that the cultures drawn revealed he had a urinary tract infection and also a strep infection. Another doctor said that he felt those cultures were contaminated by bacteria from the skin. Apparently he also had a "borderline abnormal fatty acid deficiency" show up on his newborn screening (we still don't know what this means). His vital signs continued to look good and the only thing the doctors could agree on was that he appeared to be healthy at the time.

Thursday, October 23
Tyler remained in the Isolette overnight with stable body temperatures. A new attending pediatrician (Dr. Edwards) came to us to tell us they knew (that his cultures showed signs of infection) and what they didn't know (if those cultures were contaminated). The plan was to repeat the cultures. He also suggested that Tyler have a lumbar puncture to rule out meningitis. This freaked us out but we gave consent. About 3 hours later, we found the results of the lumbar puncture were negative. Tyler was out of the Isolette for 5 hours and kept his temperature up but he was put back in the Isolette overnight. His vitals were still good.

Friday, October 24
Tyler came out of the Isolette at 8:00 in the morning. Shortly after that, one of the residents came in to report that the repeat blood and urine cultures were also negative. He explained that just like the lumbar puncture, it only meant that there was no indication of an infection at that point in time. It was possible that the 3 days of IV antibiotics had already killed off any signs of infection. Although there was still a possibility that Tyler had an infection earlier, we were relieved to know that he didn't have an infection at that point. Dr. Edwards later said he wanted to finish the course of IV antibiotics treatments (10-14 total days) just to be safe in case there really was an infection at the time this all started. Tyler moved from Intermediate Care to General Care (the only difference being how closely he gets monitored). Tyler remained out of the Isolette all night and only had his temperature drop to 97.0 once--when a nurse left him in saturated bedding. We were furious with the nurse's negligence but we were happy he didn't have to go back into the Isolette. Vitals were all good.

Saturday, October 25
Tyler has been out of the Isolette for 24 hours at this point. He had maintained his body temperature with the help of many layers of tightly swaddled blankets. In the morning, one of Dr. Edwards on-call partners came in for rounds. She said Tyler did in fact have an infection when he arrived at the ER Tuesday evening. I don't know if this was her opinion but she said she took the call from Bloomington and that he presented as "a very sick baby". She did say his vitals looked great and that his prognosis was very good. She stated that he will finish his antibiotic treatments and will be here until Thursday or Monday, depending on how he does in the next couple of days. He stayed out of the Isolette all day and night with stable temperatures.

Sunday, October 26 (Today)
Tyler has been out of the Isolette since Friday morning. He hasn't had his temperature drop below 98.0. We were given the okay to give him his first bath. He kept his temperature up despite being wet. He has started to sleep between feedings and seems much more comfortable.

At this point, Mike and I are just thankful that Tyler appears to be doing okay. This has been a very stressful and trying time for us as a family but we do appreciate all of the thoughts and prayers that have been sent our way. I hope there will be no new updates, with the exception of Tyler's discharge. We hope he will finish the course of antibiotics without any temperature drops and that we will get to take him home (again) on Thursday. However, if something comes up in the next few days, I will attempt to put updates on the blog site. Please continue to keep our family in your thoughts and prayers!