We Had a Baby (7 Months Ago) Shout HOORAY!

24 days, 3 hospitals, 1 ambulance ride, and dozens of tests. That is how parenthood began for us. We always heard that parenthood would change everything, and that it’s not easy, but this was different, this was something we were not prepared for.

Orem Community Hospital

Elizabeth Virginia Gibb was born on February 1, 2017. Her birth was quick. She came three weeks early and had the umbilical cord wrapped around her neck. She had low Bilirubin and low blood sugar. The nurses told us that this was typical for babies born a little early, there was nothing to worry about, she just needed extra help. Five days after Elizabeth was born she came home. she had good sugar levels, and her Bilirubin was at a safe level. We were so excited to be home with our beautiful baby girl.

48 Hours

We brought Elizabeth home on Monday. Jess gave her a tour of the house, which she slept through, and our new life was officially underway. Lauren fed her, Jess changed the diapers, and Lauren’s parents were there to help. Things were great.

Provo Hospital

At our well baby checkup with the Pediatrician, Elizabeth’s temperature registered 92 degrees… Not Good! The doctor said to get her to the hospital. Yeah, we were terrified. We got checked in to the hospital in Provo. There were a ton of doctors, nurses, and other staff in the room (at one point, about 10 people). Her blood sugar was low. Her temperature was low. Her blood pressure was low. They got her stable and started running tests. We felt like we were in an episode of House; we had a whiteboard in our room that had a list of different tests they were running and different diseases that could cause the symptoms. They did an MRI and found an abnormality in her brain. They put a feeding tube down her esophagus (and it was actually Feeding Tube Awareness Week). We were there for a few days before they transferred us up to Primary Children’s Hospital in Salt Lake City. We needed more specialists.

Primary Children’s Hospital

Lauren got to ride in the ambulance with the pediatric life flight team. Jess drove the car up. We were there for two weeks. We slept on a tiny couch in her room. We found out that Elizabeth had a stroke. Also, she was losing weight more than she should have. She was born at 47th percent and when we were finally released, she was in the 1%. They continued to run tests. She didn’t fit the textbook diagnosis of any disease or condition. When she finally reacted positively to one medication, they settled with the diagnosis of Mild Transient Congenital Hyperinsulinemia Hypoglycemia.

Mild: Not severe

Transient: Most likely will go away

Congenital: Born with

Hyperinsulinemia: makes too much insulin, which causes hypoglycemia

Hypoglycemia: low blood sugar

Elizabeth was diagnosed essentially with the opposite of diabetes. Someone with diabetes doesn’t make enough insulin, Elizabeth makes too much. We will never know for sure what caused the stroke, but the most likely scenario is her body made too much insulin which in turn drove her blood sugar to a dangerous level which caused the stroke.

 

When we were released from Primary Children’s Hospital. We weren’t certain what the future would hold. We had a billion questions, first and foremost, will Elizabeth live a normal life? Unfortunately, there is no way of knowing right now, it’s a big game of wait and see.

What we know so far.

Elizabeth is now 7 months old and her life is a little different than average. Elizabeth laughs and plays like all babies do, but she has a few delays. At her last pediatric specialist appointment, they said she was about to the level of a 4 month old. We are working with physical therapy and occupational therapy to help her along. She should be holding her head up, reaching for things (hair, or our glasses), playing with toys, and rolling over. She’s not doing that stuff so well. We have special games we play with her, special stretches, and a special chair she has to sit in a few times a day. The chair, also called a pediatric corner chair, or the captain’s console, was given to us by the early childhood development program that she’s involved with called Kids On The Move. A boy scout had made some for his Eagle Scout project.

Elizabeth in her corner chair

Elizabeth is laughing, smiling, kicking her feet, sucking her fists (we often find her double-fisting it) and she’s started on pureed veggies and fruits. She isn’t allowed to sleep through the night because her blood sugars (BGL) go too low, so we have to set alarms and wake her up to feed her. She gets her blood sugar checked at least once a day, but sometimes we have to check it 4 or 5 times if her BGL has been going low. Also, her eyes have been a bit wonky since May or June, and if she doesn’t grow out of that, she will need glasses, an eye patch, or surgery. Also, at her last checkup, she was in the 17 percentile for weight, so she’s made improvements, but she is still little.

 

Our life

We are very familiar with the staff at the local pediatrician's office and the local pharmacy. With her weight loss, we have to go in for weight checks pretty often. We have called the on-call endocrinologist in the middle of the night many times. Elizabeth continues to need an increase in her dose of medication because she outgrows it and her blood sugar drops (it’s been in the 40s a time or three since she’s been released). We have a lot of follow up appointments. Endocrinology, neurology, ophthalmology, pediatric specialist, etc. And that’s just what we have so far. We’ve become facebook friends with one of the nurses we’ve worked with (Hi Jessica!). We recognize all but one or two of the Pediatric Hospitalists if we see them around town or around Utah Valley Hospital (Matt! Dr Au! Shad! Beau! Nurse Strange!). We walked out of the hospital with a child in one hand and a medical degree in the other. We know how to calculate ounces to milliliters or milligrams. We know how to put in a nasogastric tube (go ahead, Google it... or don’t). Lauren has commented that she has learned more about anatomy and science in the first month of Elizabeth’s life than she did in all of her formal schooling.

 Things will work out

When we were in Orem Community Hospital, a missionary couple came around to give us the sacrament and share a thought. They gave us a card with a picture of Gordon B Hinckley and a quote on it. The picture looks like it was a copy of a copy. The words are slightly cut off and the quality is really poor. However the message on the card helped us get through the challenge of being in the hospital for a month with no answers regarding our baby. That card is now hanging in our home as a reminder of the experiences we have been through. If we have a difficult day, we think of that message and how much peace it has given us. The quote reads

“Things will work out. It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers” -Gordon B. Hinckley