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Preemies
johnnys june
member
first roller coaster ride...what now?
johnnys june
member
in Preemies
So in my intro i explained my preterm labor, c-section, and my 25 week old, 1 lb 8 oz son,.......We had 6 good days in the NICU with only minor/normal issues like blood sugar, and oxygen levels....then day 7...
We received a phone call at 3:30 AM. My baby boy developed a perferation in his bowel and the contents were leaking into his abdomen. They had to perform an immediate minor surgery to put in a small tube to allow the contents to drain out, then discussion of a more detailed surgery in the future. Our world was rocked in moments and were terrified. Later that day while sitting with him, we were told he was very sick, he had developed 2 infections on top of the bowel issue, as well as low blood pressure. He was getting blood transfusions, 3 antibiotics, meds for the bp, plus all the everyday things like IV fluids, fat, vents, ect. At shift change we were asked to leave temporarily so they could give report. We headed to the cafeteria for dinner. 15 minutes later we were called on our cell phones and asked to come to the NICU immediately. When we got there, there were a swarm of docs and nurses around his bed, he was coding. I couldn't think, i just cried. They resussitated him, and gave an epi to restart his heart, but the doctor's told us it would wear off in 30 to 45 minutes and prepared us for the worst and a DNR. In minutes we went from having having a sick baby to having to say goodbye. How do you do that? 45 minutes came and went. His heart rate stayed strong, even normal. Everything else was in the crapper though, including his bp. Finally after 12 hours of up down emotions, preparing for him to go at any minute, stroking and holding him, telling him it's ok to let go if he needs to, ect, We couldn't bare the thought of him suffering. We called the and were prepared to make the hardest decision of our lives. My number one question "is that HIS hearbeat, or is it just meds and machines?" The doctor's immediately responded "that's HIS heartbeat"...the meds are for everything else. In seconds we went from saying goodbye yet again to "we're fighting then." My baby boy was not giving up. It appeared as if he was just hanging on, when really he was putting up a fight! 48 hours later, here we are. His stats are making SMALL improvements. Some are better some are worse, but he's stable, and his heart remains strong. He has a perferated bowel, a hematoma in the back of his head, low bp, 3 infections, and the expected under developed complications like his lungs and what not. He's on tons of meds and antibotics, still on the transfusions, 2 ventilators, and has 4 different IV's. But he's here...one more day...one more blessing. My husband and I are not giving up on our litte boy, and hes' not giving up on us. He is still very sick, and we have to face the reality of the situation in the back of our heads...but our hearts are fully loving and supporting him and offering him hope, faith, and positive energy. Tomorrow he's schedule for surgery to go in an check out his bowel, prepare it if possible, and look for any additional damage or bleeds. We're waiting on the results from an ultrasound of his head to see if the hematoma is any larger or small.
And then, there's us as the parents....After 3 days being at the hospital, no sleep, emotions all over the place, hitting rock bottom, digging for hope, finding some faith, and having your heart both broken and overjoyed at the same time...we're exhausted. The nurses stressed that we go home, take a break, recharge, sleep and come back. He is in the best hands, and has the best 24 hour babysitter he could ever have.....but then there's the guilt...the post partum...the desire to be with him 24 hours a day. But the emotional toll on my body, the recovery from the c-section. all of it is too much in moments. I know I need to be healthy and the best I can be for my baby...but how to let go of the feeling of abandoning him. I know he needs his rest...I know I need my rest. But I want to be with him. Does he know I love him? Does he know I'm always with him? Does he know that as a mother, he had my heart from the beginning and by having him I'm daily allowing my heart to live and thrive outside my body through him?
I haven't even had time to process. Will I ever? My mind races. This roller coaster has the highest peak, the farthes drop, and the fastest speed I've ever been on. And it's only day 9...
Thanks for reading...I don't know where else to turn, who else to talk to, or where I'm going to find the strength I need...
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Re: first roller coaster ride...what now?
Hugs
I am so sorry you are going through this. Try to get some rest so that you can be their for your son. I will be keeping your family in my thoughts and prayers.
My heart goes out to you, that's all some really tough stuff. I do believe he knows your his mom and you love him, there's just something about that connection that science can't explain, and no amount of distance or boxes or wires can dampen. Being a mom to a baby in NICU looks different than what we're used to, but it doesn't make you any less of a mom.
I have some ideas for things that may help you feel more present when you can't be, you can sleep with a blanket, or small lovie and bring it with you for the isolette so he has something with your scent on it.
You can take a small tape recorder and record yourself reading him books, or singing, or just talking to him and telling him you love him, anything you'd want. The nurses could play it in his isollete when you're not there.
There's something called a womb tunes. I'm not sure if your NICU has them, but it's basically a box that playes the sound of a heartbeat and whooshing noises etc that would have been common in the womb. It soothed my DS.
Do you live far from the hospital? Are there guest care rooms at the hospital so you could rest closer to him? I imagine it's even harder to leave when he's been so sick recently, but agree you definitely need some rest.
Hugs and prayers to you and your family.
I felt these things, too. And all of your feelings are normal. I told myself just to make it through the next 10 minutes when taking it a day at a time seemed unbearable. Reading your post brings it all back for me, and I am crying for the hurt you feel, and the hurt that so many of us have been through. I can't tell you where the strength comes from, but somehow we just keep going.
When my baby was the sickest, we stayed at the Ronald McDonald house just across the street from the NICU. I couldn't bear to go home (an hour away), and knowing I was just across the street let me rest easier.
Sending big hugs your way, and lots of thoughts and prayers.
After a loss at 13wks and years dealing with IF and failed treatments (3 failed IUI and 1 failed IVF), we have been blessed with DS (surprise BFP) and now his little sister (2nd round of clomid and TI) on her way.