The After Party...

September 14, 2015: The After Party

Hannah is 4 and Galactosemia has become the norm.  Any time a plate is set in front of her she asks, "Dis have milk in it?"  She began preschool this fall and mama was pretty nervous.  We packed all of her meals (breakfast, lunch, two snacks) into Doc McStuffins lunch bag and she was on her way.  Her first week the teacher had absent-mindedly given Hannah a cheese stick for snack time.  Hannah quickly let the teacher know, "I tan't have dis, dis have milk in it." Her teacher was impressed and so was mama :-)  

You know how a typical symptom of CG is speech difficulty?  Hannah's speech difficulty is that she can't stop...It's a real concern, because no matter how much you ask her to stop talking- she just can't.  In fact, her speech is so rapid and continuous that it affects the hearing of those around her...it's a serious problem that we've been trying to solve but we just don't have it under control yet.  

"Hey mama, mom, mama, mommy, mom, hey, see how quiet I'm being?"

The phenomenon of birth order is amazing, (thank you Dr. Leman).  Hannah is the third child of four, and the only girl.  According to birth order principles she has qualities of first born children- leadership, (AKA "bossiness"), and organization (irritated when someone moves her things). She's a terrific big sister to her two year old brother, Jax. I'm not sure how he feels about that, because right now he can't really talk...

Yesterday, the kids were playing in the backyard (my four + six neighbors).  Jax made his way around the house to the front yard, and down the sidewalk.  When I stepped outside I hear Hannah's voice (imagine an adorable Muppet yelling).  "Mama! Jatson escaping!"  She was chasing him down the sidewalk towards the end of the street. Luckily, she was wearing her hot pick superhero cape. Unluckily, they're the same size and Jax's is a little faster...

Don't worry, we got him :-)

6 Months & Counting

Hannah Claire 6 months old

Hannah's results are in: Her first levels were 4.5. Which, apparently is high but normal for an infant. We will stick to a very restricted diet.

I started her off with carrots. A scary experience beginning foods; so much to research before shopping and actually eating. Measuring galactose in baby foods is a new thing, and it's difficult to find the research.

For example: Beech-Nut baby carrots contains 0.8, Gerber contains 4.4, and Heinz contains 0.2. Since her body can't break down the galactose, we of course don't want any in her diet. I'm on the hunt for Heinz baby carrots. The grocer is out so with great anxiety I settle for Beech-Nut, but kept them in the cabinet for another 3 weeks before feeding her.

She loved them. She couldn't get them fast enough.

Now on to green beans. This time I was looking for the Beech-Nut brand because it contains 0.3, Gerber contains 0.4, and Heinz contains 0.6; making it more difficult because you can't just stick to a particular brand. We'll see how she likes these...

So Much Change, So Little Time

Hannah Claire 4 months

Last month we moved across the country: 2,000 miles, 4 days, 1 Uhaul truck, 3 little ones, 1 wild ride.   Settling in and Hannah just had her first appointment with her new medical team: a genetic specialist, a genetic counselor, a nutritionist, and RN.  Needless to say, they are now official members of the Hannah Claire Fan Club. ("I'm not only a member; I'm also the president").

So happy to report at 4.5 months she is right on track developmentally. She's rolling over, almost sitting up, trying to crawl with all of her might, laughing up a storm, and ready to begin eating!

After the initial anxiety attack, I'm beginning to look forward to this new chapter in our lives. Leaving the safety of a bottle full of warm soy formula and venturing into baby food jars with varying galactose levels is terrifying. I'll report back once the jars are opened and she has her first bite...yikes.

ACRONYMS

Before we left the NICU, the RN enrolled us in the NICP (Newborn Intensive Care Program).  The NICP is a program sponsored by ADHS (AZ Dept of Health Services) that provides monthly home visits from an RN to check on Hannah's ECHD (Early Childhood Health and Development). This morning was her first visit. Our nurse from the OCSHCN (Office for Children with Special Health Care Needs Program) was a sweetheart. Hannah turned on the CHARM (big smiles and coos) and quickly won the nurse over. Hannah is 2 mos, 9 lbs, and 21 in. The RN observed Hannah during her TT (tummy time) and offered suggestions to help her neck strength. During her monthly visits she'll assess if Hannah is developmentally "on schedule". Then she can provide us with information we may need on AzEIPs (AZ Early Intervention Programs). Kiddos that qualify for the AzEIP receive early intervention services, such as physical therapy, and speech therapy so that they can have every opportunity for ODL (Optimal Development and Learning) and as parents isn't that what we all WANT?

Hannah Claire 2 months old

New Friends!

Gregory 3 1/2 & Hannah Claire 2 months

Just had the opportunity to meet some new friends! So thankful for Melissa and her little guy Gregory coming over to play! Gregory is 3 1/2 and has Galactosemia too. Melissa contacted me through the Parents of Galactosemic Children group (PGC) and lives only 20 miles away. It was so nice to have someone who knows firsthand what we've experienced, can answer questions we have, and can sympathize with our concerns. I know she will be both a great resource and friend.

Not Milk?!

"Breast is best!" except when your baby is Galactosemic. I breast fed my two sons, until they were two. Yes, that's right, 2! Breast milk is nature's miracle, with a list of benefits longer than my arm. I was heartbroken to give up that experience with my only daughter, but none of those benefits applied to her. The opposite really. It was poisoning her and could cause long-term problems and even death if she hadn't been diagnosed.

A wonderful lactation consultant helped me through this process. After 8 days of Sudafed, peppermint altoids, and pumping to comfort, my milk supply diminished. I went from pumping 10 oz & then nursing Hannah, to pumping almost nothing. I have always had an 'oversupply' of milk. Pumping 10 oz before you nurse your baby is not the norm. By the time we came home from the NICU, the milk from my breast was in my deep freezer. 120 oz of it.

The lactation consultant gave me some words of wisdom: "Breast milk is a gift. Even if your baby can't have it, another baby can."  And that's so true. I found a family 20 miles away that is adopting a baby boy this fall. His new mommy will feed him the breast milk Hannah couldn't have.

Happy Birthday

Hannah was born on my 32nd birthday. She was the best gift I've ever received. 6 lbs 8 oz and completely perfect. We went home and she spent the weekend basking in the attention of her two big brothers. She took to breastfeeding like a champ.

On Monday morning at her check-up she was a little jaundice. On Tuesday it was worse. We went to the lab to test her bilirubin level. It was 28. Any # higher than 20 can cause deafness and brain damage. We were immediately admitted to the hospital. When her bilirubin level hadn't dropped after 12hours on the lights, we were rushed to the NICU like we were on fire (by 2 doctors and 4 nurses). Now we knew how serious this was.

After 3 more days of intense photo therapy her # had only dropped to 18. That afternoon the doctor came into our tiny room to tell us that her newborn screening results had come back and that Hannah has Galactosemia. He explained that it's a genetic disease. Hannah lacks an enzyme that breaks down galactose, which is milk sugars. Since her body can't metabolize it, it builds up as a toxin and affects her brain.

They listed the possible complications that accompany it, then left us alone with our worst fears and a box of soy formula. We were completely heartbroken. We went through each complication on the list and faced the possibility: learning delays- I'm a teacher, speech delays- we can get her speech therapy, cataracts- surgery, tremors- if it's serious I can homeschool her, ovarian failure- she can adopt...We met each complication with tears.
Once she was on soy formula her bilirubin # began dropping more quickly and after 10 days in the NICU we were discharged. (Her bilirubin was at a 9 the day we left).

We had an appointment 2 days later with a genetic and metabolic disease specialist, Dr. Amato. I assumed going into the office of a geneticist would be like going into the lab of Tony Stark. I was wrong. He gave us answers to our questions, though. More importantly, he gave us perspective: We can do this. She will be fine. She can have a normal life. This will become 'everyday'... and so far, it has.

Yellow baby (when her bilirubin was 28).

Gray baby (after spending so much time in phototherapy).