I am trying to officially go home tomorrow and start a routine of commuting here twice a day. I must say I'm having a harder time with it than I thought I would. All things considered we are lucky to live a mere 20 minutes away from the hospital as many of the parents seem to live up to an hour away and make a few trips a week rather than a day. Brent is ready to "get back to some sort of normalcy" however and I know that health wise it would do me some good to do so as well. We have met with the social worker and have been assured that if uncomfortable with commuting, we are able to call anytime and reserve a room for a night or 2 as long as the hospital is not full.
I have been asked by the social worker to help with a pamphlet she will start working on to orient the preemie parents to the NICU routine. She simply wants an opinion on the rough draft which will take awhile to complete. I am happy to oblige. I have also been asked by a few other nurses and friends how I feel. To be frank - I can't describe how wrong it feels to have gone through all of this and know that I have 2 children that I can't hold, can't take home, can't nurse and perhaps most damaging, cannot by any means protect from anything at all - including trauma, infection, pain and perhaps much worse. My body actually needs them - I sit and pump every 2 to 3 hours and think of them just to see if I can bring forth a little more milk. I dream about the first time I might be able to hold them and think what an amazing moment that might be. I think about them at home getting into everything and laugh about them playing with toys and sitting in the kitchen beating on pots like my brothers and I used to. I stare for hours at our babies through thick plastic and relish the thought of simply touching a hand. I joked the other day that Mary Louise and David absolutely have it made with us. All they have to do is poop, pee and eat and we just tear up with pride. A gripping of the hand or opening of their eyes is simply an added bonus some days. I've intently studied every new tiny fluff of hair, every movement, their equipment, their mannerisms in an effort to get to know them as much as I can. Brent actually noticed the discoloration on David's little belly prior to the nurse being concerned. We both realize how difficult getting from each point A to each point B is. It's actually quite heartbreaking. But our only concern is our children - they may be tiny but the mean everything to us.
I hope that gives those interested some type of insight - felt good to journal it anyhow.
Today Mary Louise looks beautiful. She blinked her big eyes for us a couple of times and held our fingers for a bit. She seems to have found her tongue and sticks it out and blows bubbles quite often. She has also taken to sucking on her feeding tube (placed only to release air- still not feeding yet). Her vent pressure and oxygen have been reduced significantly and she is maintaining stable vital signs without any medications. Her antibiotic therapy continues and although we don't have conclusive results on the organism, her bacterial infection is considered to be "minor". Overall, the neonatologist is pleased with her progress as of yesterday evening. He is talking about starting feedings as early as next week. She has lost a bit of weight - she is now 2.1 pounds. However, after stopping all blood pressure medications, some fluid loss is expected. I haven't spoken to the doctor about it yet though - hopefully this afternoon.
David looks good this morning. He's had some swelling around his face but we've been told that he had "lots of fluids" during his surgery so the swelling is no more than expected. The neonatologist was pleased with the surgical outcome as of yesterday evening and even went so far as to tell us that yesterday "was a good day" - followed by an assurance that more bad days were sure to come. Ha - can't let us relax too much - we might crack a smile. His incision looks good. He is producing lots of urine and has been completely weaned off of the nitric oxide. Overall he is much more stable than he was a day or 2 ago. He is still on dopamine however and there is talk of starting to wean again today. His vent settings are still a little high but considering all he's been through over the last 24 hours, this is not unexpected. They have been able to reduce his pressure a bit. The doctor is thinking about starting feedings as early as next week but David would have to really do well to do so. He was moving a bit this morning and although he is still on pain medication and slightly sedated, he seems to have processed the anesthesia well.
The feedings: along with the excitment of food comes a new list of risks for our little ones. Most concerning is the possiblity of necrotizing entercolitis. This is when the intestine develops essentially a rotten area which must be removed. Preemie babies are prone to this potentially fatal complication and we're told it takes a "bit of luck and prayers" to avoid it.
So we're still hanging in there - appreciating the happy moments and little milestones and awaiting the next hurdle...
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I know this broader separation will be extremely difficult. Always follow your heart and inner wisdom. Be gentle with yourself, allowing for healing, prioritizing accordingly. The hospital staff and social workers know your experience can help others. With Huge Prayers and Love.
ReplyDeleteHeather I know all of this is very difficult for both you and Brent. Not having your babies right down the hall is going to be difficult. We will continue to pray for strength and healing for all of you. I know it seems so far away, but those sweet babies will be in your arms soon.
ReplyDeleteyou have so perfectly expressed what a mother of nicu babies feels! i know that we all have a better understanding of what you are going through.
ReplyDeleteand who could be better to help with the pamphlet?!
blessings for you today, and many extra blessings as you prepare to move back home! just one more impossible situation that a nicu mom must live through..
with prayers and love
heather harper
Heather,
ReplyDeleteYou don't know me, but my son was recently dishcarged from the NICU after 4 long and trying months. I learned about your blog through a friend and dropped by to see how the babies are doing.
I think it is a wonderful idea for you to help Linda out with the pamphlet. After going through this, I expressed an interest in starting a support group for NICU parents. I think having someone who has literally walked a mile in my shoes to talk to would have helped me to cope with the hard times.
My son was born at 25 3/7 weeks and he weighed 1 lb. 12 oz. Everything you have spoken about in your blog hits home. I believe that you have the same neonatologist that my son had, Dr. Bossano. If it weren't for this man and Dr. Saqer, I don't think my son would still be here.
He had a PDA that was moderate to large and was given two rounds of Endocin to close it. It was closing when he became infected with Pseudomonas, a gram negative rod at only 2 weeks old. I knew it was bad when the Dr. said he would have rathered it be E-coli. Nevertheless, my son had the fight of his life. He became septic on a Wednesday and by the Sunday, had begun to gain fluid and his kidneys shut down completely.
The doctors sat us down and told us that if the kidneys did not begin to function within 72 hours, he was in big trouble. Through the grace of God, prayers, and the capable hands of the doctors and nurses, his kidneys began to function again on the Monday. From there, he spent 2 months on a ventilator and developed chronic lung disease. When he was just beginning to make headway, he was diagnosed with Retinopathy of Prematurity and was flown to Tulane for eye surgery, twice.
I know all too well what you are going through. After all that my son went through, he is still here and is on the road to a healthy future. Take heart in knowing that you are not alone. Rely on friends, family, clergy, and most of all your husband.
I can attest to the fact that the nurses and NNPs, Christine, Kami, Sherry, and Angela are second to none, and Drs. Bossano and Saqer are experts in their field. We think of the NICU staff as our friends, part of our extended family, and our son's Angels. I know it is very difficult to sit and listen to the bad news and constantly be reminded of the roller coaster ride that is the journey through the NICU. Know that your children are in the best hands possible. During our stay, I adopted the motto, "When he has a good day, so do I." Everyday I anxiously waited to hear Dr. B say "It was a good day," everyday.
My sincerest condolences for the loss of your son. I cannot begin to fathom what it is like for you. I do know what it is like to feel helpless and to sit and stare through the plastic at the miracle that is your baby. We mistakenly assume that they are too fragile to withstand the trials of prematurity. Truth be told, they are resilient, determined, and stronger than we are. We break long before they do.
We are praying for you and your children.