Its been 10 years since the birth of our first babe with Galactosemia.
I've been wanting to write about it for a long time and now seems like the time has come where I am able to share and hopefully encourage some others who have found themselves on this road.
We have 5 kids, 3 with Classic Galactosemia and I am so very thankful for them and for this disorder.
Galactosemia is apart of their story but it does not define them. Thankfully, we and they:) are defined by who they are in Jesus and how He sees them. Perfectly loved, perfectly wanted, perfectly valued, perfectly treasured.....who we are does not come from how the world sees us or defines us or values us (thank God) but again, how God sees us.....loved and wanted.
Sometimes I wished I started journalling when Jonah (now 10) was first born, as I am sure I have forgotten a lot since then. Galactosemia rocked my world or maybe better, God rocked my world through Galactosemia..who knows. But the massive, painful, heart wrenching changes I went through, and still continue to go through, is part of what has brought me here today....and boy am I THANKFUL!!!
truly thankful....
The Birth of Jonah Part 1
(guys might not want to read this part)
Labor starts around 3:00am Friday morning and I move from my bed to the couch so to not wake my husband. Nice mama of me eh:) Contractions are coming every 15 minutes but i am able to sleep in between. By 7am I have to wake him up as they are much closer, more intense and I am working! I am planning on having a home birth, aiming for a water birth so we start calling the groupies who we've asked to come for the party! (not sure who is partying though)
The call to the midwife was funny because my contractions are about 3 minutes apart, I'm moaning very loud with each one (like a cow, can't help it) and she says to me,"If your water breaks, call 911".
Me....huh? 911? my husband is laughing and says you have a long way to go still..
oh dear
I've got my list pasted to my mirror reminding myself what I want to do in labor, I know I am ridiculous...you know, birth sitting up, feel the head, music, blah blah blah....
midwife arrives around 83o maybe? this would be a good time to pull out the birth records but who knows where those are....
I am 8 cm. I want my waters broken to speed things up. I don't want to get into the tub we started filling up...... there goes the water birth. Glad we've had that set up for a few weeks in Jak's bedroom. (at least he got a swim out of it)
I will spare the rest of the details but thought my back broke during delivery, seriously! and when Jonah slipped out after a few short pushes I thought i had delivered a water melon!!! He felt huge!
weighing in at 10 pounds 9 ounces!!
10.9
big brother present, husband helped to catch (I think....lol)
Friday morning November 30th 2001 10:30am
Jonah Mac is born:)
By Sunday night, 2 days later, I felt something was wrong with our new babe....really wrong.
Part 2
How did I know something was wrong? I felt it. I am sure there are things my subconscience is picking up on that I am not consciously aware of, able to recognize and articulate, but I just knew.
Jonah was spitting up a bit and this was a red flag, as this is not normal behaviour for 2 day old babes.
I remember expressing my concerns to family, friends and of course our midwives. I remember saying,"something is wrong!" By day 3 he had lost 1 pound. That's 10 percent of his bodyweight which is allowed with new babes but this was another red flag.
As the days progressed the spitting up worsened. Each feed was becoming so stressful as the spitting up was quickly being replaced by vomiting and soon projectile vomiting. I was beside myself.
This is not normal!!!
By day 5, a Wednesday, my midwives arrived to do a home visit and by this time Jonah had not gained any weight in 2 days and vomiting was worsening. Though my midwives hadn't seen him throw up I was beginning to feel like a fool trying to describe this severely abnormal behaviour. And you know when you are living your life, it is yours, it is your reality, it is what you know and sometimes you can't see what is really going on, that maybe, your situation isn't normal. I needed someone to enter my reality and see this wasn't normal and make that executive decision that I was unable to make in this mental chaos I was drowning in.
Until the next night....
H.H had plans to go out after a meeting and wasn't coming home between his 2 events. I remember telling him I was really worried about Jonah, he was sleeping so much and just had this horrible feeling something was wrong (ya think?)
I don't remember much except at the last minute he changed his mind and decided not to keep his evening plans. Thank God he did. By the time he arrived home Jonah was unresponsive. I couldn't get him to wake up, to rouse him, to do anything. I remember being worried but it was such a fogging time in my head, which was preventing me from making wise, rational decisions.
I called our midwife and she said take him to the emergency room asap and she'd meet us there.
Finally, some adice that make sense to me and we were there 10 minutes later.
Walking through those emergency doors, instantly surrounded by medical professionals (as our midwife called ahead to alert us of our arrival..bless her) whisk our lethargic, unresponsive baby out of my arms, it was like out of a movie...
Part 3
The nurses were unable to get an iv started anywhere on his wee body. He was so dehydrated and even though we had the best of the best, no one could get a needle into him. Even into his scalp:( After many, many attempts, a patient, faithful nurse was able to start an IV in Jonah's ankle. Whew!
It's amazing once you get re-hydrated how quickly you become responsive again. He perked on up quite quickly and was happy to nurse . But now, the tests began. Bilrubin levels are crazy high, very jaundiced, liver is swollen and enlarged, dangerously close to liver failure, and question is why? He continues to nurse at this point as there is no indication that he should stop. And for those who aren't aware, children with Galactosemia CANNOT breastfeed, as they lack the enzyme that metabolizes galactose, which is extremely high in breast milk.
After days under the "lights" his bilirubin levels are still not coming down and he is spilling certain sugars into his urine. More warning flags. We've now been in the hospital for 3 days and not much improvement, time for more tests and this time I am told I have to stop nursing. PARDON?
Our amazing pediatrician comes in and says....."So, we are going to be checking for this really rare liver disease. We haven't seen a case here in 40 years. He likely doesn't have it but we've got to check for it. You have to stop nursing because if he does have it, babies with Galactosemia can't breastfeed. Bt continue pumping incase he doesn't have it"
PARDON ME????
Galacto-what...stop NURSING? This is insane. I am beside myself. But, get this, this is how selfish I am, I am more upset about not being able to breastfeed than I am about Jonah potentially having this disease. Disgusting I know. Go ahead and shake your head, I just did. (For those who didn't know me at this point I was the N word about breastfeeding...kinda rhymes with yahtzee....Breastfeeding was like that gold standard of mothering in my shallow world view of mothering. If you were not nursing your baby and nursing them til they were at least 16, okay maybe a bit younger, then you were frankly a horrible mother in my eyes.....so, so disgustingly wrong, disgustingly judgemental, disgustingly immature and shallow and selfish!!!!....BTW.. I have repented from this view and been healed of it....thank God!)
That week was one of the longest in our lives, waiting for results, reading literature that sends our minds whirling in pain and uncertainty. What will his future hold. Will he suffer irreversible brain damage? Will he live? will he die?
I remember one visitor coming in and me being a state of inconsolability. I remember her standing behind me with her hand on my back as I cried uncontrollably. Though my husband doesn't believe me, it is one of the only times I was so lost is sorrow I couldn't stop the tears .(he says I love to cry and that I especially love to cry just loud enough for him to hear no matter where I am in the house :) So he doesn't buy it ( looking back, I likely did experience that state when my sister died). Anyway,
4 days later i get called down to the nursing station by myself and that doctor on the other says,"
"just got your son's results and he is affected. .....(me....silence, trying to choke back tears).....Did you hear me?" he says.
"Yes, I did". I say.
I don't remember anymore. But I know that is all he said. No comforting words, no I am sorry's, no directional advice...nothing. He just hung up.
Jonah was diagnosed with Classic Galactosemia 14 days after he was born. 7 days after being admitted into the hospital.
I am (was) lost.
