Hi all š
Iām just kinda reaching out to someone who may be able to relate in some way.
My LB was born 6 weeks ago prematurely (34+0) due to fetal distress and IUGR. This was completely out of the blue, I left work to go for a growth scan and I was admitted that night and my beautiful baby was born.
There were issues with my pregnancy 2 weeks before, his movements had reduced and he wasnāt meeting criteria on the monitor. However, unknown to me I had covid and so was given 2 weeks isolating before my 2nd growth scan was arranged - he had measured under the 10th pc.
LO was born at 3lb 8oz, believed to be doing well and we were recovering together until a midwife noticed he was extremely lethargic and checked his temperature and he was hypothermic. He was rushed to the nicu where it was discovered his blood sugar was unrecordable and was hooked to a glucose drip and put on high flow breathing support.
The early days are a bit of a blur, the drs believed that it was something that would resolve itself in a few days, it isnāt uncommon for premature babies to struggle maintaining their sugars. But it didnāt resolve. He spent 4 weeks in the nicu, he was put into a controller hypoglaecemic episode to take bloods to send to Manchester childrenās hospital, who confirmed he has hyperinsulinism and our crazy rollercoaster journey began.
He was nil by mouth for 2 weeks, receiving only glucose infusions and eventually started on Glucagon while Manchester and our local created a plan for him. He responded positively to every medication.
He was stabilised on Diazoxide and Chlorothiazide which we give him at home as well as his blood sugars tested 3 x a day to check they havenāt dropped below 3.5mmol. Since being home my mental health has crashed, pricking my babies foot disgusts me and the whole medical side just fills me with anxiety, his blood sugar machine counts down from 5 after a sample and I physically shake when Iām waiting for the result.
His IUGR is another thing entirely, I blame myself so badly for my body failing him and probably causing this blood sugar disorder in the first place. His feeding isnāt 100% established but he is doing amazing, taking about 70% of his feeds via bottle with top ups from a ng tube - he is fed on a 3 hourly basis (we have to set alarms). Sometimes he wakes for feeds but mainly, doesnāt. He wakes for approx 40 mins a day, he weighs 5lb at nearly 6 weeks old - anyone have any similar experience with a preemie? My anxiety is through the roof and Iāve convinced myself already that there is something seriously wrong with him š My husband is off work for Christmas atm, I am TERRIFIED of him going back to work and me having to do this alone.
oh, and did I mention my mum died when he was 2 weeks old? I said goodbye to her on FaceTime as her breathing support was removed and she passed away while I sat next to my poorly babies incubator.
i just feel lost and that I need to wake up from this bad dream š