Saturday, July 2, 2011

Week 30

Gestational age...30 weeks. Even though my babies turned three weeks old on Monday; I am reminded that they should still be baking in the womb every time I peer into their isolettes or when I hold their tiny bodies against my skin and realize their tininess. They are true fighters. When they get knocked down with infections, bad pic lines, breathing problems...they are given the strength to attack. It seems ever since they were born there has not been a day that goes by when we are not confronted with a child's new found illness or arising issue. The surgery we thought would be the end to Grayson being on the ventilator was not so. Although the surgery closed his ductus; his lungs were still full of fluid making it impossible for him to ween off of the vent. With an infection on top of his fluid filled lungs and his blood pressure fluctuating; something had to be done. He has been on the vent since he was born and we were warned of the damage it can and will cause to his lungs. The next step was to give him a 10 dose course of steroids that would help him over the hurdle allowing him to ween off of the vent. Like all other treatments, steroids came with their long list of risks for both now and on down the road. Ultimately every decision is left for us to decide; but how do I make a decision without having gone to medical school and being given the sufficient training? This is when I have to trust Him and pray that the doctors have the knowledge and the discernment to make the better choice. All I know is I want to see my son's entire face, I want to hold him skin to skin outside of his isolette, I want to hear him cry and see him move unlike the sedated baby I visit daily.

It seems like lately every time i go to visit the boys I am told what is wrong...not what is right. After hearing dreary news for the past three weeks; it is hard not to let it get me down. I almost come to expect that something is wrong with them. Monday night was a breath of fresh air. Having stayed all afternoon with the boys, I went to fill out the paperwork for their birth certificates and then went home for the evening (which is not typical as we usually go up at 8 every night). Jeff called to check on the boys around ten and was told that Grasyson was off of the vent and on a SI-Pap ( a mask that straps around his head that does less than a vent but more than a nasal cannula). WHAT???? Could it be??? Are we over the sick hurdle and on the mend?!!! I have never been so relieved before! I anticipated the following morning where I would get to hold my baby for the first time! My once sedated baby was now making up for loss time and giving his nurse a hard time...I loved watching every fist clench and kick he did when she was trying to do her assessment! Although I still could not see his face as the SI-Pap covered the majority, I was able to kangaroo with my little fighter! I held him skin on skin for about two hours. It took him some time to get comfy with the SI-Pap apparatus on; but once he was calmed with his pacifier and a gentle rock; he rested so sweetly!

That was enough to make my entire month; however, the day just got better and better! Brock and Keaton were on their final bag of TPN (IV nutrients) and would only be given breast milk. Camden was not too far behind the other two little porkers (he is still being treated for an infection which is probably why his feeds are not increasing as fast). Driving home from the hospital and reflecting on the day, I couldn't help but to cry. Not crying for myself or out of sadness, but rather out of pure love and graciousness that my boys together had a great day for the first time. It was a nice break to the bad news streak.

I prayed and nagged the doctor's about when Grayson could get put onto a cannula and off of the SI-Pap which he despised. A day later and my baby boy was moved down to a cannula...I could now see his entire face. Although being off of the SI-Pap did not calm his spirits; kangaroo time with mom sure did. He has continued to fuss and thrush about with the nurses so they occasionally have to sedate him; guess a two pound baby is too much to handle! Every four weeks the boys' doctors  chang out. The staff doctor we had when they were first born was back on duty. He was proactive when Grayson's nurses' informed him of his 200+ heart rate and uneasiness (all except when he is kangarooed). He explained that Grayson was withdrawing from all of the narcotics he has been on and became dependent on since his first days of life. He put him on a low dose of morphine that served as Grayson's normal  and would slowly ween him off so by the time he comes home he will be completely off and will not be tortured by the effects of withdrawing.

I feel like the boys are now on the up. They still have their issues: Grayson's lungs are still quite hazy (praying they clear so he is not put back on the SI-Pap), Camden's thyroid is too low and he is now receiving meds to balance it out, and Keaton still forgets to breathe quite often (especially when he is comfy); but these are things to be expected from preemie babies. Camden ended the week as the porker of the group. We had noticed he looked extremely pudgy compared to the other three boys. Sure enough he weighs a whopping 3 lbs!!! Keaton at 2.9, Brock at 2.8 and Grayson at 2.5.

Camden holding Daddy's hand

Brock and Momma time

First time kangaroo caring with Grayson

Keaton being a big boy holding his booper!
We live each day for what it is worth; trying not to look to far into the future as things frequently change. There are major complications that every preemie is faced with: NEC, brain bleeds, and eye issues. This week the boys will be getting thorough eye exams to see the zone and stage in which their eyes are developed to or lack there of. They will also get their last head ultrasound to look for brain bleeds or an increase in the stage of bleed (last one unless something arises to cause concern to perform another one). I could sit and worry about what the outcomes could be...but instead I will enjoy the boys' first Fourth of July with them, trusting the Lord's plan.

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