Hello all,
Life since our boys were born has been a rollar coaster of visitors, activities, and emotions. The thursday following the birth of our beautiful babies the doctors and nurses called us in for a meeting. They described to us how sick the boys were (basically on death's doorstep) and then informed us that if they did survive, they would both be severely handicapped-with the possibility of them being hospitalized the rest of their lives. They then gave us the choice to let our boys go. What a devestating day! They encouraged us to make our decision within the next 24 hours. the next day, after having a different neonatologist review the head ultra-sounds, they encouraged us to wait to make a decision until after a new set of tests on Monday. The ran the tests on Monday, but results weren't ready unti the following day.
Tuesday morning, March 13, one week and one day following his birth, Spencer made the choice for us, and went to magnify his calling in the Spirit world.He was a sick little fellow and we feel priviledged that he stuck around as long as he did. We were able to give both of them a name and a blessing Sunday morning with both sets of grandparents, two uncles and one set of great-grandparents in attendance. It was a special day.
Tuesday afternoon we received the status report prepared for Micah. According to our interpretation of what the doctors said Micah was extremely close to following his brother (a few more days maybe) and they again gave us the option of sending him home to join Spencer. If I have one major peice of advice it would be -do not make any major decisions on such a day. We came close to deciding to let go of Micah as well. However, we weren't positive and Seth was wise enough to say, if we're not sure, then we shouldn't do anything. Thank goodness! The next day, upon reflection we decided that in our emotional distress we couldn't do anything but stick to our original plan, which was let things go on as they were. Basically we chose to say "Heavenly Father, you may have these little ones if that is Thy will, but we're going to keep them until you tell us you need them". He let us know that it was Spencer's time, (spencer got perforated bowl syndrome, something untreatable in his state) and so we said good-bye.
It has been over a week since we made our choice to hang on to our little Micah, and he likewise is hanging on. His lungs are still very very very sick. They started giving him a new treatment involving steroids two days ago that they reserve for only extreme cases because of possible side-effects. However, his heart is looking better, and they are weaning him off of some of the treatments they have been using for that. They did another brain ultrasound (performed every Monday, unless needed more often) and although he still has the same problems as before, things have not progressed, or gotten worse. So basically, things are about the same, Micah is not really getting better, and not really getting worse. Each day we are grateful for any good news we receive, like his oxygen support being down to 61 instead of 84, etc. We are learning a whole new set of medical data, and are becoming pretty effecient in reading what all of his monitors are telling us. We continue to pray that Micah will remain with us and are grateful for all of the prayers of faith and support in his and our behalf. We have been buoyed up during this difficult time and are eternaly grateful.
For those of you wondering about what our family is doing, The arrangments right now consist of Scotty and Seth living in Logan (school and work do happen, and are neccessary unfortunatley). Max, Simon and I are staying in Tooele with Seth's parents so that I can go to the hospital each day and visit Micah (children under 14 are not allowed in the NICU during RSV season which lasts usually until the end of May). For the past two weeks, my Mom picked me up and drove me because until yesterday I wasn't allowed to drive (results of my C-section). She however, after 6 weeks, is finally going home to California, and my dad and brothers still there. Right now, our family gets to be together on the weekends. However, as the needs of the family change, then most likely our living arrangements will change as well.
That, in brief, has been our last two weeks. Services for Spencer were held on March 17, and his little body is now a part of "Baby Land" in the Logan City cemetary.
We might keep this up better in the future, and we might not. things are still in upheaval and it might take us a while, but we will try to keep people informed on how micah is doing. Hopefully, that will continue for a long, long, time!
Saturday, March 24, 2007
Tuesday, March 6, 2007
Middle names
We've chosen middle names for our kiddos:
Spencer Dee Johnson (middle-named for Melissa's maternal grandfather)
Micah Dale Johnson (middle-named for Seth's maternal grandfather)
The fact that both middle names start with "D" is a bonus.
Spencer Dee Johnson (middle-named for Melissa's maternal grandfather)
Micah Dale Johnson (middle-named for Seth's maternal grandfather)
The fact that both middle names start with "D" is a bonus.
They're here!
We've had a hectic day or two: Micah and Spencer (or more correctly, Spencer and Micah... more on that later) arrive yesterday afternoon, Monday the 5th, at 1:24 and 1:25 PM.
During her daily non-stress test on Sunday, Melissa's nurse noticed that she was contracting regularly and pretty significantly. That's nothing new: the NSTs always brought out the best in Melissa's contractions. What was new was the timing. Melissa has her weekend NSTs in the afternoon. This one took place at about 3:30, just half an hour after her afternoon dose of nifedipine, which is designed to quash contractions.
Guessing that something might be afoot, the nurse called for the resident on duty in Labor & Delivery to check Melissa for dilation. He determined that she'd dilated to 4 cm and recommended an immediate move to L&D for monitoring. To make a long story short (it's late, and I'm tired), Melissa labored on for about 20 hours--through a regimen of nifedipine intended to stop her labor, through an epidural, and finally through a regimen of oxytocin intended to encourage labor. She continued to dilate, but Micah (who occupied the pole position) refused to move down and engage for delivery. His copious swimming pool probably had something to do with the problem.
In the end, the docs elected to break Micah's water-bag. And chaos ensued immediately. Micah's heart-rate immediately dropped from the 160s into the 60s, and the placenta ablated (that is, pulled away from the uterine wall). Melissa lost a lot of blood in a big hurry. The delivery team whisked her away to the operating room (which they'd fortunately prepared in advance, just in case), put her under general anesthesia, and delivered the babies via rapid C-section.
Both babies looked good upon delivery. Spencer (who was delivered first because he was closest to hand when the docs reached in post-incision) weighed in at 1 lb, 9 oz. Micah measured a healthy 3 lbs. Both received an initial Apgar score of 8 (1-9 scale, 9 = best) from the team in the Newborn Intensive Care Unit (NICU).
And today, Melissa's feeling much better. The boys had a tough day, predictably (the first day outside of mom is almost always rough for preemies like Micah and Spencer). Micah had trouble taking up oxygen: his blood / oxygen saturation rates dipped as low as 45% (100% is best) this morning. As of 2:00 this afternoon, though, he was doing somewhat better (oxygen saturation at 80%+).
Both boys seem to have some shunting issues in their hearts. All babies have an "extra" vessel in their hearts that allows blood to move from the right ventricle to the left without passing through their lungs. In utero, this is OK since Mom oxygenates the blood anyhow. After birth, this obviously isn't OK. In full-term babies, this "extra" vessel closes off just before or shortly after birth. In preemies, the vessel sometimes doesn't close off on its own. There are various things docs can do to fix the issue, but that's news for another day. Suffice it to say that both boys are in critical but stable condition at the moment.
I've attached lots of pictures...
During her daily non-stress test on Sunday, Melissa's nurse noticed that she was contracting regularly and pretty significantly. That's nothing new: the NSTs always brought out the best in Melissa's contractions. What was new was the timing. Melissa has her weekend NSTs in the afternoon. This one took place at about 3:30, just half an hour after her afternoon dose of nifedipine, which is designed to quash contractions.
Guessing that something might be afoot, the nurse called for the resident on duty in Labor & Delivery to check Melissa for dilation. He determined that she'd dilated to 4 cm and recommended an immediate move to L&D for monitoring. To make a long story short (it's late, and I'm tired), Melissa labored on for about 20 hours--through a regimen of nifedipine intended to stop her labor, through an epidural, and finally through a regimen of oxytocin intended to encourage labor. She continued to dilate, but Micah (who occupied the pole position) refused to move down and engage for delivery. His copious swimming pool probably had something to do with the problem.
In the end, the docs elected to break Micah's water-bag. And chaos ensued immediately. Micah's heart-rate immediately dropped from the 160s into the 60s, and the placenta ablated (that is, pulled away from the uterine wall). Melissa lost a lot of blood in a big hurry. The delivery team whisked her away to the operating room (which they'd fortunately prepared in advance, just in case), put her under general anesthesia, and delivered the babies via rapid C-section.
Both babies looked good upon delivery. Spencer (who was delivered first because he was closest to hand when the docs reached in post-incision) weighed in at 1 lb, 9 oz. Micah measured a healthy 3 lbs. Both received an initial Apgar score of 8 (1-9 scale, 9 = best) from the team in the Newborn Intensive Care Unit (NICU).
And today, Melissa's feeling much better. The boys had a tough day, predictably (the first day outside of mom is almost always rough for preemies like Micah and Spencer). Micah had trouble taking up oxygen: his blood / oxygen saturation rates dipped as low as 45% (100% is best) this morning. As of 2:00 this afternoon, though, he was doing somewhat better (oxygen saturation at 80%+).
Both boys seem to have some shunting issues in their hearts. All babies have an "extra" vessel in their hearts that allows blood to move from the right ventricle to the left without passing through their lungs. In utero, this is OK since Mom oxygenates the blood anyhow. After birth, this obviously isn't OK. In full-term babies, this "extra" vessel closes off just before or shortly after birth. In preemies, the vessel sometimes doesn't close off on its own. There are various things docs can do to fix the issue, but that's news for another day. Suffice it to say that both boys are in critical but stable condition at the moment.
I've attached lots of pictures...
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