I've been trying to start this blog for days now, but kept putting it off. Knowing how hard it would be to put this story into words and share it is overwhelming. But Lenwood has fought so hard and come so far that his story needs to be shared. This entry was written on 7/21 - Wednesday. So here it goes:
I went in to see my OB a few days (Friday) before Lenwood was born on Sunday. I had been feeling bad and was having lots of what we thought were side effects from the terbutaline pump. The dr. ran a few tests and lowered my dose and sent me home. The next day she called. The two tests she ran on my liver were significantly elevated. She wanted me to be in the hospital while they figured out if it was pregnancy related or something else. While in the hospital my blood pressure elevated and Sunday evening Lenwood started having drops in his heart rate. The drs. decided he was under too much stress and an emergency c-section needed to be done. I didn't know for a few days just how concerned they were at his birth. The neonatologist was actually at the birth waiting to intubate him with a breathing tube as soon as he was born Typically it's a NICU nurse and nurse practitioner and they usually intubate (or take another action)after seeing how the baby breathes on their own. He was in respiratory distress when he was born and was intubated one minute after birth and rushed to the NICU.
I was able to seem him for a rushed moment inside the incubator:
After they got him stable and we were able to talk to the NICU doctor, we found out just how bad he'd had it in the womb. On top of the abdominal ascietes (swollen abdomen) my womb had become a very unhealthy place. While Lenwood was very swollen in his face, stomach, and scrotum when he was born due to te ascietes, his arms and legs were extremely thin. The neonatologist believes that he was surviving in the womb on the stored fat in his arms and legs. I still cry every time I look at his tiny little arms and legs. I just can't seem to get over how horrific that is or how my body could have become such a terrible place for him to be.
Here is a photo of Lenwood right after birth. This picture really doesn't show the swelling well at all. It looks much worse in the full body shots, but we he diaper-less so we can't post those.
As for the swelling...after he was born they drew 10 oz of fluid from his tummy. He weighed 4 lb 10 oz at birth.
There was so much fluid in his abdomen that it was pushing his diaphragm up which was smooshing his lungs and heart. His heart was an odd shape when he was born and his lungs appeared extremely premature. They were very unsure what would happen at first. Luckily, for the most part his heart and lungs were able to 'un-smoosh' themselves after the fluid was removed. So his heart is fine and his lungs seem to be recovering. Tuesday morning he was struggling so hard on the breathing tube that they were telling us that they might have to give him a drug to temporarily paralyze him while his lungs grew if he wasn't able to stabilize his breathing on the ventilator. The vent has different settings they adjust to help meet the baby's breathing needs. The main ones are rate (# of breaths going in per minute), % oxygen (the air we breath is 21%, but babies need a higher percent for a while) and the pressure (force of the breaths going in). They had to have the pressure so high that they were afraid it was going to start tearing small holes in his lungs. They also look at their blood gases to check on their breathing. This looks at what his body does with the different components of the air. For example, one of his struggles was that he was not able to get rid of the carbon dioxide from breathing. We just exhale it, but his body was retaining it which is bad.
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| Holding Daddy's finger his first day in the NICU |
So I had just seen him for the first time Monday and come in Tuesday morning to all of this news. It was very overwhelming and scary. We spent the whole day on pins and needles waiting to see how he did. I sat by his side and talked and sang to him. At some point around mid-day Tuesday his blood gas tests started looking better and they began weaning his rate down. He maintained and throughout the rest of the day and night he continued to improve so they continued to wean the rate, % oxygen and pressure down throughout yesterday. The doctor was even excited about how good his lung x-ray looked yesterday. I'm still too nervous to relax, but it seems like he may be getting over this hump. He is in a much better place yesterday and today than on Tuesday as far a breathing. They might even get to remove the vent today and try him on a c-pap. Thank you for your prayers. They are working. It's amazing what a roller coaster this can be hour by hour especially the first few days.
Another thing they are watching closely is his ascietes. He still has fluid on his tummy and scrotum even after removing 10 oz. They are watching closely to make sure it doesn't all come back. So far, he has tee-teed enough to keep it close tot eh same size. They measure his tummy twice a day. So far he's doing ok with this, but is still pretty swollen.
Although he is still very sick, he looks SO MUCH better in just a few days:
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| Sweet feet |
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| Eyes open looking around |
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| Long legs and feet |
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| Conrad and Teague visit Mommy in the hospital/ They brought ice cream and we had an ice cream party on my bed. Should have seen the blanket after that. :) |
He has been through so much already and still has a long way to go, but I am so proud of him for being such a fighter. I am so grateful they found out what was going on in the womb and were able to get him out before he got even sicker. I wish so badly that I could take all this pain away and go through it for him. Please keep praying because I know God hears your prayers and is right beside him helping him through this struggle. He's such a strong, brave little boy and I can't express how grateful we are for your thoughts and prayers.
