Tuesday, July 29, 2014

Hank: 1 month

We're just oh, 2.5 weeks behind on this....sorry bud! #secondchildproblems



Weight: 6.9 (6/30)

Height: 20 inches

You're in NB diapers and clothes!

You eat roughly every 3 hours, but some nights go 4/5 hrs!  Nursing has been an adventure (since you were IV/bottle fed for the first 2 wks) but we're making a lot of progress.

You had many firsts this month (after you arrived home):
-First time in a car, when you finally decided to come home from the hospital!
-First time running errands and eating at Cracker Barrel! Everyone commented on how cute and tiny you are!
-First walk around the block. Your brother liked showing you all the cool tractors.
-Tummy time...you're not really a fan.
-Official bath and thankfully you enjoy it.

Nicknames: Itty Bitty, Koala (Dada calls you this!) and everyone calls you Baby Hank!

Your brother LOVES you so much and is so kind to you. He loves to help Momma and he makes sure you have a blanket, buddy and a toy!

Momma and Dada love you more than you know....

Monday, July 14, 2014

One day at a time: Hank's NICU story pt 2

The second day of Hank's life was Friday the 13th and a full moon....and of course it had to be eventful.

We arrived at the new hospital shortly after they got him all squared away (the transport team and new dr's etc). The NNP who transported him was fantastic and so calming (while being informative). We had to scrub in for 3 minutes and put on a gown before we could go back to see him (this became second nature but let me tell ya, 3 minutes go by sllllowly when you're waiting to see your child). He was in bed spot #2 at the "Meadow", as they called his section of the NICU.

We were instantly bombarded with Doctors, NP's, Nurses and so much information. I was going on about 3 hrs of sleep all night, after delivering less than 24 hrs ago...so needless to say, that first day was a BLUR. Thank God my Mom was there to ask all the medical questions.

The NICU Director stopped by and fortunately she and my mom know each other (they go to the same meetings etc). Anyway, she graciously gave us a "courtesy room", so we could literally crash and take a nap. That hour nap was amazing.

We met with the Geneticist, Dr. Bircher, and the Neurologist, Dr. Velaro, and came up with a plan. They were immediately leaning towards a diagnosis of an "Inborn Error or Metabolism", but there are literally 400+ IEMs, so it would be difficult to know which one.

Dr. V wanted to rule out anything Neurologically (some IEM's can cause seizures), so the next day (Saturday), he placed an 24hr EEG monitor on Hank. Thankfully, that did not show any signs of seizures.

Sunday was Father's Day, so my parents and brother/SIL brought us lunch to eat in the cafeteria (it was closed). It wasn't how I pictured the day would go, but it was nice.

Monday: they took a sample of H's urine, froze it and put it on dry ice and shipped it all the way to Baylor in TX for an "organic acid" test. They also sent a ton of blood to Vanderbilt for more tests.
helping put on the collection bag...H kept peeing every where but in the bag..ugh!

His billi levels were also high, so they put in on a "photo therapy" light for 2 days.

His numbers were improving, but he was only on TPN (total something nutrition) thru his IV.  On June 18th, his Drs decided that he could slowly reintroduce milk. I had been pumping since the first night (as soon as he was admitted, they gave me a pump), so I was so thankful that he could actually drink it!! They started him out with 5 mL...one whole teaspoon. Poor guy drank that in one gulp! I was fortunate to be the first person to give him a bottle. Ben and I took turns feeding him, which was great.



June 19....ONE week old and we finally got to hold him. Since he had a UAC in, it's not recommended to hold him b/c the IV could pull out. However, it's really up to the nurse. Our fantastic nurse that day was comfortable with it, thankfully! It was amazing. He couldn't be out from under the warming table for too long, but anytime with our guy was fantastic.

Wednesday, July 9, 2014

One day at a time: Hank's NICU story (pt 1)

The night Hank was born, the nursery Nurse (Nancy) came into our room around 11 pm to take Hank back to the nursery for a few hours. I was looking forward to some much needed sleep, but was prepared to be woken up by a screaming/hungry baby shortly.

Well....1 AM, I woke up. No baby. I was half asleep, but figured he just wasn't hungry yet.

Shortly after, a Neonatal Nurse Practioner came in and said "I'm Sarah, the NNP....I'm sure you're wondering what's going on with Hank....".  Needless to say, she had our attention.

Sometime after Hank arrived back in the Nursery (after our last feeding/bonding time), he began to "grunt", which is a sign of respiratory distress. They had to put him on forced oxygen and admit him to the "special care nursery" aka NICU. They began running a battery of tests to determine why he was in distress.

His white count was sky high, which usually means infection. They immediately began antibiotics. His blood gas levels were also high, which was concerning. His blood glucose (sugar) level was 14, which is extremely low.

They let us visit with him for a short time, while they were waiting for results of more blood work.  It was surreal.



Sarah, the NNP, came to our room an hour so later and informed us that his blood gas level was getting worse and he was in metabolic acidosis. If those levels continue to get worse, they would have to transfer him to Centennial (another hospital in town) b/c their NICU had specialist.

Less than an hour later, we got word that he was getting worse and they were transferring him. Unfortunately, we could no longer visit him b/c they had to put in a UAC (umbilical artery catheter...basically an IV in his umbilical cord) and that was sterile.

My heart broke. I texted my mom (at this time it was probably closer to 4 AM) to prepare them for what's to come. Thankfully, they arrived at the hospital shortly after I called. I needed my mom.

My OB/PP nurse came in and asked if I wanted to stay or get discharged when Hank was, so I could be with him. Of course I wanted to be with my son, but I was scared to leave so soon. I literally gave birth 12 hours ago. Thankfully, my body handles labor, delivery and PP very well, so I was okay to leave so soon.

The Neonatologist came in to talk to us before he was transferred. She was direct, but very comforting. However, her news wasn't good. At the rate he was going, his LONGEVITY (her words) wasn't looking good.

She left (after giving us all a hug) and I immediately LOST it. This was not happening.

The transport team from the other hospital arrived and got him loaded in the special bassinet. Ben described it as a bassinet on a tool box. We were able to touch him and give him one last goodbye before he was off.

The OB on call came in shortly after to get me squared away, so I could leave. My nurse gave me the low down on what to and not to do and then gave me the biggest hug. Again, I lost it. I'm so glad I had Ben b/c he was my rock during all of this.

We left one hospital and headed to another.



 Pt 2 coming soon...