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Preemies
Natalie_may
member
The best laid plans....
Natalie_may
member
in Preemies
So I haven't posted for a while because we had been doing so well. Both boys were in cribs, room air, and bottling every other feed, the end was in sight! The NICU, and life, however, had other plans.
On Monday Liam's lower leg was swollen and an x-ray was ordered.... well the group b strep found a new home (as if the meningitis wasn't enough) in his tibia and knee, awesome. We did an MRI that night which came back "highly abnormal". The next day we had a consult with a private practice orthopedist who drilled holes in his tibia and femur to help drain the infection and take the pressure off of his growth plate. The long term issue is abnormal growth in that leg (ranging from a limp to twice yearly bone lengthening, we will find out once he has time to grow). The short term issue is 6 weeks of antibiotics through a PICC line, instead of two more NICU weeks we have six.
On a slightly brighter note, Hunter had his ostomy reversal today. He should be off the vent by the end of the weekend (they want to keep him comfy on the morphine), and eating in five days. I can't begin to explain how happy I am to never have to look at, and clean, and change that reminder of how close we came to losing him every day.
Both boys are undressed on warmers and on vents, it is eerily reminiscent of day 1 again, but at 5 1/2 and 6lbs now. I am hoping for 3 more weeks for Hunter and I am hoping that we can take Liam home the day that PICC line comes out. I had my shower and finished the nursery, I just want my babies home to fill it.
Thanks for the vent and hope all is well!
ETA: I wrote this last night while tired and upset and included a phrase that I was rightfully called out on. I am forever grateful that my son received the ostomy that saved his life, however I was feeling burnt out on the sometimes messy side of it. To all moms dealing with or who have dealt with this procedure I apologize.
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Re: The best laid plans....
I am so sorry for the recent set backs. I can understand where you are coming from. We aren't even halfway thru our NICU journey and I just want our babies home.
I will keep you and LO's in my thoughts and prayers, and hopefully they will be home in just a little while longer.
Poor Liam! I hope this is the last thing for you guys and he joins his brother - at home - in 6 weeks!
I am so sorry your LO is struggling. I hope you make it home ASAP.
BUT...my child has a ostomy and this comment made me sick at my stomach
to explain how happy I am to never have to clean out, or change, that disgusting (sorry but it's true) bag of poop again
My DD still has her ostomy. It saved her LIFE. I promise you when your LO has a true blow out diaper that bag of poop will seem like a cake walk. Im not trying to start drama but this literally made my skin crawl.
FAQ: My Friend Just Had a Preemie, How Can I Help?
I am so sorry to offend, you are right, it saved his life too and I am so grateful it was done, I worded that very poorly. What I really meant is that I am happy that we are over that hump in his life and that the very obvious reminder of what happened is gone... off to reword.
thank you. Im sorry sounded so harsh. I was in a terrible mood this morning and my fingers just went insane on the keyboard. I truly am glad he has had the reversal and I will pray for your boys everyday!
FAQ: My Friend Just Had a Preemie, How Can I Help?