Wednesday, November 30, 2011

Eli's Surgery

So my intention was to update Eli's progress while we were still in the hospital. The two days we were there were very busy and we actually came home a couple of days earlier than expected. A week later we would still like to tell you how everything went and how he's progressing now.

This first day is written by Ryan.

On Tuesday November 22 we started our journey by heading to the UW Children’s hospital to have Eli’s type and cross lab which is where there check his blood type and put an ankle band on him. This assigns the blood to him in case a transfusion is needed.
We then went and checked into the Ronald McDonald house to stay the night before surgery and since only one parent can stay at the hospital I would be spending the nights there.

Operation Day
We arrived at the hospital at 7:15 in preparation for the 8:30 surgery. We were checked in to the pre-OP room and then got to talk with several nurses, anthesialogists, and our two surgeons. Questions were answered and the days schedule was given. We were blessed with two wonderful surgeons, Dr. Iskandar – Pediatric Neurosurgeon and Dr. Mount – Pediatric Plastic Surgeon. We asked about the length of surgery and Dr. Iskandar said they would be done by lunch otherwise they would get hungry and need to take a break. Both Drs. did a great job of making us comfortable with the procedure. The whole time this was going on we had a very happy baby.

Around 8:50 it was time for him to be taken back to the operating room and ReneƩ got suited up to carry him back. She got to hold him as he drifted off to sleep. We were then off to the waiting room where we had a great support group of family and friends.
We were told that it could take an hour or so to get set up and they would let us know when the surgery started via our pager. After an hour and a half we decided to ask for status and found out our pager wasn’t working and that they started the operation at 10:20 and everything was going great.
We continued to hang out in the waiting room and found that technology made the wait easier. There were smartphones and Ipads in use. It helped to see all the prayers and well wishes.

Then at 11:45 a nurse came out and told us that everything was going great and they had started to close.
Next thing we knew the surgeons walked out around 12:30 to see us and tell us everything was done and went very well. They explained what they ended up having to do. Dr. Iskandar also stated that they took a vote in the OR and they decided to make him look more like Mom than Dad. A surgeon and a comedian. All joking aside, both of the Doctors were great, very personable and down to earth. We were told that he was in recovery and that we would be able to go see him shortly.
Around 1:00 Renee and I got to go back to the recovery room and see our Little Elijah. He was still asleep when we got there and had a little turban on. The surgeons even put a tigger sticker on it. He started to respond to our voices by cracking his eyes and squeezing our fingers. We then got to talk with the recovery nurses and the head anthesalogist who both said that he was doing very well and did perfect during the surgery. He then had to have some blood drawn to check his levels. After he started to come out of the anthesia, he was moved to the pediatric ICU.

Once we got up to the PICU we were met by several nurses and doctors who went over things with us. The attending had some concerns of him being anemic and pale. He talked to us about him possibly needing a blood transfusion, and that we would find out when the blood test results came back to see if his hemoglobin level has went up. After the results came back it was determined that he needed a transfusion. It was pretty amazing to see how much his color changed and he started to perk up during and after the transfusion which took 4 hours.

By night time of the first day he had really perked up and was playing with toys and we even got a smile out of him. It was amazing to see the changes he went through in the course of a day. He was one tough little guy.

Sunday, November 20, 2011

Eli's Head

When Eli was born there were a few things said multiple times in the operating room. One was that he had a lot of hair. I remember the anesthesiologist saying that they should get a barber in the nursery. Another thing they kept commenting on was how big he was (8 lbs 15 oz), especially for being a week early. They also kept saying he had a big head! Which is partly why the nurse had to lay/push on my stomach for quite awhile along with using the vacuum to get him out (and I thought having c-sections were easier than labor...ha!). When we finally got to hold and love on him we did notice how big he was but we also noticed that his head was a little misshapen. We didn't think much about it at the time because he was a c-section baby that was stuck pretty high up and didn't have a chance to have his head molded in the womb or on the way out.
Fast forward a month...his head was still a little oddly shaped so at his 1 month well check we asked out pediatrician (Dr. O) about it. They measured his head like normal. It was still on the big side but they weren't to concerned about it. Dr. O also thought the shape was due to the c-section and that it would shape out on it's own. He continued to keep an eye on it, even having us come in at 3 months to check the growth. It was still in the 95% but on the curve. Through all this Eli's head continued to grow out in length but not in width creating his head to look like an oval from the top. At 4 months we were prepared to go into the doctors office and ask for a referral for a second opinion. Thankfully we didn't have to ask, Dr. O brought it up first and said he wanted us to get an opinion from a place that treats different forms of Plagiocephaly (abnormal head shape) with DocBand Helmets. We went to Cranial Technologies, Inc in Chicago for a consultation. They took measurements and pictures of his head (that look like baby mugshots) and then after a clinician looked at them she came in to talk to us. She looked at Eli and felt his head. She said that he had symptoms of Scaphocephaly but was concerned about some ridging along his saggital suture. The saggital suture is the suture that goes down the middle of your head. She wanted Dr. O to run some tests to see what was going on inside Eli's head.
A CT Scan was ordered and an appointment with a Neurosurgeon was made. We went for the CT Scan and he did great! They did have to put him under anesthesia, but he came right out of it and didn't have any problems. A couple of days later we met with a Neurosurgeon that showed us the scan and then told us his diagnosis was Saggital Craniosynostosis (Craniosynostosis is a condition present at birth in which one or more of the joints between the bones of your child's skull (sutures) close prematurely, before your child's brain is fully formed.) The treatment for this would be a cranial reshaping procedure (surgery to fix it)! Although we were initially taken back by the diagnosis, in the back of out minds we kind of knew this was coming.

October 11, 2011 Before CT Scan (age: 5 months)

After CT Scan (happy as can be)

We decided to get a second opinion, not because the diagnosis would change but we wanted to make sure whoever did the surgery would be very experienced. So our pediatrician got us in at the Children's Hospital in Madison, WI. We met with a Neurosurgeon/Plastic Surgeon team. They agreed with the diagnosis and told us how they would proceed. We decided to go with this team for a lot of reasons, but mainly because they do this surgery 15-20 times a year, they are pediatric doctors, and they have been working together for 12 years.

November 16, 2011 1 week pre-op (Age: 6 1/2 months)

So this Wednesday (Nov. 23) Eli will be having surgery. It will be a 2-3 hour surgery and he will be in the hospital for 3-5 days. I will be trying to update on this blog throughout our stay at the hospital and the recovery after.
God has continually shown his hand in all this and we have complete faith that He will continue to through the surgery and recovery process. Please lift up the following in your prayers this week: surgeons, surgery team, nurses, Eli, Teagan, Ryan and myself. Pray that we can be a light to the hospital staff and other patients this week also!

Thursday, November 3, 2011

At 6 Months You...

* recognize your name when said
* recognize the sign for milk and get excited when I use it to ask if you want some
* can sit up in a folded position
* are definatly a mama's boy right now
* try to get your toys that are out of reach