The Sound of His Life (Days 8-10)

Sunday October 9, 2011
Day 8
One of the nurses had told us they want to make allowances for any religious observances we may have; and that if we would like a pastor to come in for a baptism or for prayer, then it would be fine. (Usually only parents, grandparents, and siblings are allowed in the NICU.)  We told him that we don’t believe in infant baptism, but if they allowed it, we would like our pastor to come and pray over him. He said that was fine…
Now we know that God hears our prayers just as much as He hears our pastor’s, but we want to share the blessing of our baby with whomever we can! -and the Bible says, “Call for the elders of the church…” So we invited our pastor to come up here on Sunday afternoon, to pray over him… It was such a joy to be able to “show” our baby to someone else- to point out his adorable extra finger, and his cute little 6th toe. We couldn’t see his little mouth and nose very well because of all the tape around the breathing tube, but at least his eye mask was off, and he even opened his eyes and looked around! We also pulled his hat back so he could see his curly reddish blonde hair (which is getting flattened by the hat). After a little while, they even let our pastor’s wife come in to see him- it was a special time for us… 
Later we made jokes about other friends coming: “Now this is Pastor Tanya, Pastor Sharon, Reverend so-and-so….” Haha of course we wouldn’t do that, but it was a nice thought!
It was a blessing to hear him prayed for, and to see someone else appreciate his life, and bless God for it…


Monday October 10, 2011
Day 9

Jason went to work again today, but then it was raining (Jason’s wife likes rainy days!) so he couldn’t work the entire day, and ended up coming back here… The children and my mom were coming too, so we would all get a turn to see the baby. But in the end, Jasmin and Skye didn’t go in, because they thought they might be getting sick. (Thankfully they weren’t, but we’ve got to be extra cautious right now.)

When we got to the hospital, a new doctor introduced himself and said that he has worked with Dr R (Hazaiah’s pediatrician) for a long time, and that he was just filling in for him today. He went over his biliruben test with us, and said that he hadn’t had any more apnea spells, and that they were going to give him the barium today to see if they could find the blockage. He said that he was in agreement with Dr R, that they hoped to be able to get him stable so that we could bring him home. He told us they would only do a trache if it was absolutely necessary, but that his lungs were working- it’s just that he needs to remember to breathe. They were going to start him on caffeine as a gentle stimulant to see if he would breathe better. Still worried about the symptoms of CF, we asked him how the mucous was looking in his lungs and mouth. 
“Well, he still has mucous, but there is a foreign object in his airways. If you or I had a breathing tube in for that long, our body would be making mucous like that too.”
Nurse K___ spoke up, “Yes but it’s really thick and sticky!” (CF symptom)
“Well, we’ll just have to see…” Doctor replied.
They had him in a different bed now, since they were able to take out the lines in his belly button (replaced by PICC line in his arm). This was one that closed all the way up, and had armholes on the sides. I couldn’t see him as well, but it helped to regulate his temperature better. He is still in the same private room though, so that is nice…
The doctor we spoke with seemed so much more encouraging. Maybe it was because he knew he was only going to see us that day, and so he didn’t want the burden of weighing us down with all the yuck stuff, but that was OK. It was nice to hear a more positive outlook, and to not have to worry so much, even if it was just for a day…


Tuesday, October 11, 2011
Day 10
This was probably the best day so far! 
It was raining, but I had told my mom not to bring the children up today so they could rest, and the older girls had some shopping to do, so I would need to walk over to the hospital- hopefully in between rains.  I finally got there about 1:00 (they close for doctor’s rounds between 10-12:30 anyway). I went in and sat down next to my baby. Usually when we get there the nurse comes right away to talk with us. But this time, no one came for the first hour! I just sat there with my hands in the holes of the baby bed, holding his hand and rubbing his head. I sang song after song, and talked with him all about my day, and Daddy’s day at work, and about his siblings at home…
After an hour, one of the counselors came in and asked how we were doing. We started talking about the different things Hazaiah was facing, and about the CF. Suddenly she stopped and told me, “Well, I’m a carrier of CF. Three of my sisters are carriers also, and my one other sister had the disease. We had her with us for 25 years, and she was worth every minute that we had together. None of my other sisters married someone who was a carrier though…”
Then she asked if the nurse had come in yet. Since she hadn’t, she went to find her. Soon the doctor and the nurse came in at different times, and they both had the same report:


They did the barium for the upper GIT and it appeared to go through the small intestine, but it ran out before it could complete the large intestine. (But they had done the large intestine via a barium enema.) So the results are “inconclusive” because they didn’t see a blockage. The doctor said that was encouraging, because if there is no blockage, then the main marker for Cystic Fibrosis is removed! I tried not to jump for joy at that news- we are still waiting for the test results… Also, he does still have thick, sticky mucous in his lungs; that could be another symptom of CF, but it could also be because there is a “foreign object” in his airway (the ventilator) and his body is fighting against it. 
He is still not breathing completely on his own, and his oxygen saturation declines at times, but I think that is mainly due to the mucous.
His biliruben is at 14, which is still high, but the doctor is hopeful that the breast milk will help it. (He is currently just receiving nutrition through IV.) They are not putting the lights back on; we are enjoying seeing his face without the mask!


All of this sounded more encouraging to me! Especially the lowered chance of CF…
After the doctor left, and intern came and gave me a card and a blanket. She said they were thinking of our family and that she had crocheted this blanket for me, and the nurses had signed the card. It was very nice of them, and I thanked her…
After that, the regular nurse came in and told me it was time to change his diaper- Did I want to do it?
Of course! So I changed him, and then she told me to take his temperature, and that it was time for him to eat. She showed me where to unscrew the little cap thing, and then placed the syringe of colostrom on there. I got to hold the little syringe up as it flowed down into his tummy! It may not seem like much, and perhaps it is a poor substitute for real nursing, but it was all I had, and it thrilled my heart… I noticed him making little sucking movements as it went through his feeding tube past his throat, and I mentioned it to the nurse.
“Really?” she asked, “He did that? Well, at about 34 weeks is when they start figuring out how to suck, and he can feel the warmth of the milk in his throat, even through the tube, so he probably was…”
I was elated.
She continued, “You know you can pump your milk in here if you want; I’ll close the curtain…”
It was actually time for me to, so I told her that would be great!
And there, sitting in privacy next to my baby and holding his hand, I got to pump my milk…


I had a three hour visit with him that day!
Then I went downstairs to have a snack, and finally got to update this blog a little. It took longer than I thought, because the Internet service was full, and then the pictures took longer to upload, so by the time I finished it was dark. Jason didn’t want me to walk back “home” that late, so I waited til he got here to pick me up, and we went back to the RMH to eat, and I got to tell him all about my day…
Visiting hours started again at 8:00pm, so we went back up together to tell him goodnight and to see who his nighttime nurse was. Thankfully, one of our favorite nurses was there- she always has him looking so comfy, and she seems to take good care of him.

The first thing we noticed is that he had a different thing on his face to hold the breathing tube in. We could see his face so much better! There was no tape covering his little mouth, and he still had his mask off since he wasn't under the lights, so it was such treat to look at his sweet face!:) We visited him for a while, and then she was going to feed him again, so Jason offered to hold the syringe for her. It was so sweet to see Daddy take joy in “feeding” him! Satisfied, we stayed a while longer, and then told him goodnight and went "home" to sleep ourselves…