Everything went well with Johnny's surgery this morning. The doctors did have a little bit of trouble getting the ventilator in since Johnny's mouth/throat is so small but that was the only thing that went wrong. Since they had trouble with the ventilator and his next surgery is on Thursday, the doctors decided to leave the ventilator in until then. :( It's been so hard seeing him with it in. It seems SO annoying. Luckily Johnny is pretty heavily sedated and on pain meds. I just have to keep telling myself that a few days of annoying ventilators and monitors is better than being blind for life (which is what would happen if he didn't get the cataracts removed). But we're glad that there were no complications (so far) and that we'll be done with the surgeries by the end of this week. I'm ready to be done with it all. Thanks for the prayers in our behalf. They're working!
P.S. Today is Johnny's due date!
Monday, January 31, 2011
Sunday, January 30, 2011
The Latest
The latest on Johnny is that they tested his red blood cell count and it was still down. So they did a blood transfusion. Poor little guy. When we went this morning to see him he had 2 IVs, one in his arm and one in his leg. It's so hard to see your baby go through difficult things. K.J. and Hayden were able to give him a blessing which was comforting. He goes in for his first eye surgery tomorrow morning at 7:30 am.
Thursday, January 27, 2011
The Big Question
I STILL can't get pictures on here, but I'll keep trying. If you want to see pictures right away then go to either K.J.'s or my facebook page.
The big question I get lately is "Has Johnny gained any weight?" The answer is yes, he has. He lost a little weight right after birth (which is normal) but now he's past his birth weight. As of last night he weighs 1250 grams or about 2 lbs. 12 oz. He's been steadily gaining weight which is very good. He needs to keep it up!
The big question I get lately is "Has Johnny gained any weight?" The answer is yes, he has. He lost a little weight right after birth (which is normal) but now he's past his birth weight. As of last night he weighs 1250 grams or about 2 lbs. 12 oz. He's been steadily gaining weight which is very good. He needs to keep it up!
Wednesday, January 26, 2011
Another Update
I'm having trouble uploading pictures. I'll try again tomorrow. Sorry for all the picture-less posts.
So, not tons of new stuff to update. Johnny is still the rock star of the NICU. His red blood cell count is still a little bit down but they tested his immature red blood cells and that count was really high, which is good because that means his bone marrow is producing red blood cells. They'll check the count again on Friday. We're really hoping to avoid a blood transfusion. He's still not showing symptoms of having a low count, so that's a good sign.
The eye doctors rescheduled his cataract surgery. He'll have the first eye surgery on Monday (the 31st) and the second eye surgery on Thursday (the 3rd). After talking to the doctor it looks like he will get his glasses and possibly contacts as soon as the surgeries are done. Crazy! I'm not 100% sure of the details of the post-surgery plan but I will let you know when I find out.
He got to start wearing clothes today! I love how cute he is in those miniature clothes. :)
Thanks for all the support and prayers. It's really nice to know that people care about us and our little family. Keep them coming! We love you all! :)
So, not tons of new stuff to update. Johnny is still the rock star of the NICU. His red blood cell count is still a little bit down but they tested his immature red blood cells and that count was really high, which is good because that means his bone marrow is producing red blood cells. They'll check the count again on Friday. We're really hoping to avoid a blood transfusion. He's still not showing symptoms of having a low count, so that's a good sign.
The eye doctors rescheduled his cataract surgery. He'll have the first eye surgery on Monday (the 31st) and the second eye surgery on Thursday (the 3rd). After talking to the doctor it looks like he will get his glasses and possibly contacts as soon as the surgeries are done. Crazy! I'm not 100% sure of the details of the post-surgery plan but I will let you know when I find out.
He got to start wearing clothes today! I love how cute he is in those miniature clothes. :)
Thanks for all the support and prayers. It's really nice to know that people care about us and our little family. Keep them coming! We love you all! :)
Monday, January 24, 2011
No Surgery
Johnny was supposed to have his first cataract surgery today (they do one eye at a time) but the doctors decided to postpone it until next Monday because his red blood cell count is still a little low. The cell count has been going up but it's not where it should be. Instead of doing a transfusion, the doctors want to wait a week and let the levels go up on their own. They'll also re-check his eyes to see if anything has changed. I'm glad that he won't need the transfusion and that he'll have another week to grow a little before surgery but it is a little frustrating that we have to wait to continue his treatment.
Friday, January 21, 2011
Update
I thought I would update you all on how little Johnny is doing. I cannot believe all the progress he has made in one week! He's doing incredibly well, a million times better than anyone expected him to. He's still breathing on his own (no oxygen), his heart is functioning well, he has a feeding tube but he's tolerating his feedings well (no spitting up, choking or digestive issues) and the best news of all (well, to me) is that he nursed for 5 min. TWICE! Wahoo! Hopefully we can get him going longer and get rid of that lame feeding tube!
The one thing they're concerned about is that his red blood cell count is a little bit low. He isn't having any of the signs of stress because of it (usually the baby's heart rate will go up or they'll have trouble breathing) so they are giving him iron and folic acid to try and get the count up. He's having eye surgery on Monday so if the count hasn't gone up by Sunday then they'll have to do a blood transfusion. Let's pray it goes up.
Every nurse that has cared for Johnny has described him as "feisty." He definitely knows what he wants and when he wants it and he gets frustrated easily. And if you do something he doesn't like then watch out! He has been known to hold grudges against nurses for pulling tape off of his skin! :) He has squeaky little "baby kitten" cries but they are LOUD. You can hear him even through his incubator. We sure love him.
The one thing they're concerned about is that his red blood cell count is a little bit low. He isn't having any of the signs of stress because of it (usually the baby's heart rate will go up or they'll have trouble breathing) so they are giving him iron and folic acid to try and get the count up. He's having eye surgery on Monday so if the count hasn't gone up by Sunday then they'll have to do a blood transfusion. Let's pray it goes up.
Every nurse that has cared for Johnny has described him as "feisty." He definitely knows what he wants and when he wants it and he gets frustrated easily. And if you do something he doesn't like then watch out! He has been known to hold grudges against nurses for pulling tape off of his skin! :) He has squeaky little "baby kitten" cries but they are LOUD. You can hear him even through his incubator. We sure love him.
Saturday, January 15, 2011
Friday, January 14, 2011
Johnny's Story
Hey guys! K.J. here checking in from Primary Children's NICU. A lot of you have been asking about our baby boy, so I think a bit of explanation is in order. Believe it or not, our little 2 lb. 9 oz. miracle is only three weeks early, but I get ahead of myself.
Our journey with this little guy got interesting about five months ago after his first regular ultrasound. After the nurse did the ultrasound, she told us that the doctor wanted to see us in his office. Not a good sign. When we met with the doctor, he said they had noticed that his growth was a little delayed, he had extra fluid on his kidneys and ecogenic bowel (meaning it was blocked up). On their own, these things aren't necessarily bad, but put together they are soft signs of a genetic disorder. At the time, they told us there was a good chance he had Down's Syndrome or Trisomy 18. Having had a similar scare with Eva, we knew what Trisomy 18 was and that it wasn't good. Children with this genetic disease rarely live longer than a week, and baby boys' life spans are usually even shorter.
The following months were filled with uncertainty for our little family. The further the pregnancy went along, the further our little Johnny fell off the growth curve. With subsequent ultrasounds we found that he had an AV canal heart defect which further concerned our doctors. Without getting an amniocentesis, however we couldn't get any answers. The only problem for us was that the test would not be covered by our insurance and it is quite expensive. With each subsequent doctor's visit, they became more and more concerned that he may have Trisomy 18. Finally after many prayers and several hours on the phone, our insurance company relented and told us they would cover the amniocentesis. We were thrilled to finally get some answers, so on Dec. 14, we got the test and settled in for a two week wait for the results.
Ever since that first ultrasound, we prepared ourselves for the worst. The longer we waited, the more sure I was that I would be burying my son before my 26th birthday. We walked each day by faith, unsure of many things but sure of the covenants we had made and the eternal nature of our family.
The week after Christmas we finally got the results back from the amniocentesis. His cells were
normal. We were happy, but perplexed. Nothing had changed. If anything his prognosis had gotten worse. He was falling further and further off the growth curve so this news left us with no answers. We knew what he didn't have, but we still didn't know what was going on. The doctors decided it would be best if Macie delivered at the University of Utah, because to give him the best chance at survival, he would probably have to be taken to Primary Children's Hospital. The specialist who was going to deliver couldn't meet with us until Jan. 13. We decided that we would move up to Salt Lake on the evening of Jan. 12 so that we could be close. Once again, it became a waiting game for us.
Fast forward to Jan. 11. Macie spent the night having fairly regular contractions, but not regular enough to go to the hospital. At about 6:30 am on Jan. 12, her water broke. Not sure we would be able to get to the U of U hospital in time, we rushed down to Utah Valley Regional Medical Center. Upon our arrival, Macie was hooked to monitors and given an epidural but didn't progress. Around 8:45, they lost Johnny's heart beat and we decided to do an emergency C-section. At 9:08 am, our 2 lb. 9 oz. miracle was born. At first he wasn't breathing, but after a few tense moments, he let out a feeble cry and they put him on a ventilator and he and I took an ambulance ride up to Primary Children's while mom recovered in Provo.
Since his arrival, he has done great! They took him off his ventilator on Jan. 13 and took him off his oxygen yesterday (Jan. 15). They are doing studies to see why he is so small and what caused
his heart defect. At this point, it looks like Macie got a virus early in the pregnancy that may have caused all these things, but it could also be a genetic problem. His heart defect is better than we originally thought. He may not need surgery on it until he is one or two (instead of the six to eight months we thought at first). His most pressing need right now are the cataracts he has in both eyes. Before he leaves, they will have to remove them and he will have to wear thick glasses until he is about age 13, but as long as everything goes well he will be able to see.
Not even in my highest of hopes did I believe that my son would be doing this well. Five months ago, I gave up most of my dreams and hopes of being able to raise him. Today, I am preparing for eight and thirteen years into his future! Johnny is tiny, but our doctors call him the rock star of the NICU. He is surpassing all expectations. The more I get to know him, the more I realize that this kid has a great work to do.
Our journey with this little guy got interesting about five months ago after his first regular ultrasound. After the nurse did the ultrasound, she told us that the doctor wanted to see us in his office. Not a good sign. When we met with the doctor, he said they had noticed that his growth was a little delayed, he had extra fluid on his kidneys and ecogenic bowel (meaning it was blocked up). On their own, these things aren't necessarily bad, but put together they are soft signs of a genetic disorder. At the time, they told us there was a good chance he had Down's Syndrome or Trisomy 18. Having had a similar scare with Eva, we knew what Trisomy 18 was and that it wasn't good. Children with this genetic disease rarely live longer than a week, and baby boys' life spans are usually even shorter.
The following months were filled with uncertainty for our little family. The further the pregnancy went along, the further our little Johnny fell off the growth curve. With subsequent ultrasounds we found that he had an AV canal heart defect which further concerned our doctors. Without getting an amniocentesis, however we couldn't get any answers. The only problem for us was that the test would not be covered by our insurance and it is quite expensive. With each subsequent doctor's visit, they became more and more concerned that he may have Trisomy 18. Finally after many prayers and several hours on the phone, our insurance company relented and told us they would cover the amniocentesis. We were thrilled to finally get some answers, so on Dec. 14, we got the test and settled in for a two week wait for the results.
Ever since that first ultrasound, we prepared ourselves for the worst. The longer we waited, the more sure I was that I would be burying my son before my 26th birthday. We walked each day by faith, unsure of many things but sure of the covenants we had made and the eternal nature of our family.
The week after Christmas we finally got the results back from the amniocentesis. His cells were
normal. We were happy, but perplexed. Nothing had changed. If anything his prognosis had gotten worse. He was falling further and further off the growth curve so this news left us with no answers. We knew what he didn't have, but we still didn't know what was going on. The doctors decided it would be best if Macie delivered at the University of Utah, because to give him the best chance at survival, he would probably have to be taken to Primary Children's Hospital. The specialist who was going to deliver couldn't meet with us until Jan. 13. We decided that we would move up to Salt Lake on the evening of Jan. 12 so that we could be close. Once again, it became a waiting game for us.Fast forward to Jan. 11. Macie spent the night having fairly regular contractions, but not regular enough to go to the hospital. At about 6:30 am on Jan. 12, her water broke. Not sure we would be able to get to the U of U hospital in time, we rushed down to Utah Valley Regional Medical Center. Upon our arrival, Macie was hooked to monitors and given an epidural but didn't progress. Around 8:45, they lost Johnny's heart beat and we decided to do an emergency C-section. At 9:08 am, our 2 lb. 9 oz. miracle was born. At first he wasn't breathing, but after a few tense moments, he let out a feeble cry and they put him on a ventilator and he and I took an ambulance ride up to Primary Children's while mom recovered in Provo.
Since his arrival, he has done great! They took him off his ventilator on Jan. 13 and took him off his oxygen yesterday (Jan. 15). They are doing studies to see why he is so small and what caused
his heart defect. At this point, it looks like Macie got a virus early in the pregnancy that may have caused all these things, but it could also be a genetic problem. His heart defect is better than we originally thought. He may not need surgery on it until he is one or two (instead of the six to eight months we thought at first). His most pressing need right now are the cataracts he has in both eyes. Before he leaves, they will have to remove them and he will have to wear thick glasses until he is about age 13, but as long as everything goes well he will be able to see.Not even in my highest of hopes did I believe that my son would be doing this well. Five months ago, I gave up most of my dreams and hopes of being able to raise him. Today, I am preparing for eight and thirteen years into his future! Johnny is tiny, but our doctors call him the rock star of the NICU. He is surpassing all expectations. The more I get to know him, the more I realize that this kid has a great work to do.
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