Yesterday a number of people sent me this verse from Zephaniah.
"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zeph. 3:17
I held on to this verse desperately all day yesterday. It was one of the worst and in some ways best days of my life and it didn't end until about 1:30 this morning.
First of all praise God that he IS mighty to save and that once again he saved Elijah. Yesterday was horrible as Elijah seemed almost worse in the morning and then minutes before I was about to feed him, he had not fed for two hours, the doctors told us we couldn't feed him because he would have to go into surgery in a couple of hours and needed to be NPO (no food). We were furious because being hungry is what sets Elijah off into his episodes of loosing oxygen and the hospital had already done this to us a number of times where we were told we couldn't feed him because they wanted to do test and then they ended up not being able to do tests anyway because he cried to hard and had to get oxygen. It is one of the most horrible sights in the world to watch your baby turn blue and need oxygen...especially when you feel like if you had just been able to feed him or keep him calm he would have been ok. Anyway, we had already thought we had promises from the hospital that they would not do that again. That if he needed to be NPO they would tell us in enough time to feed him one last good feeding before hand so he was as topped up as possible. So of course Elijah was upset right from the beginning and we had to fight like mad to get them to give him an IV and sucrose to help buy him off while we waited for surgery. At first we were told that he would have the surgery at 3:30. It came and went. Then we were told maybe 4:00. Then 5:30. I rocked Elijah and sang the same song to him over and over for SIX hours to keep him from desaturizing. Then at six they told us that No....they couldn't do the surgery yet...they couldn't even gaurantee it would be that day. We could wait til 7:30 and then they would call us and let us know if it might happen that day...still no gaurantees and if it didn't happen...or we decided to feed him...the wait was going to happen all over again today. Prince Charming and I both knew that neither Elijah or I could handle going through that day again so we fought and pushed and made phone calls and harped on nurses for promises. FINALLY they told us that they would make it happen that night. But it was still a waiting game...even when we were almost ready to go to OR they called and said...wait some more. It was excruciating. In the mean time Elijah ripped his IV out and bled all over Prince Charming and had to get it put in AGAIN....when he was already upset from not eating in hours. We hadn't eaten either and were really about to snap. Finally at 10:10 we left Elijah in the OR. Just minutes before his exact one week birthday. I can not begin to tell you how horrible it is to walk away from your child and he is hooked up to a million machines and you know he is going into surgery. I have never been more terrified.
Then we waited. Finally after about 11:30 we heard a baby come through the doors into the NICU. It sounded strangled and horse but it was crying full force. It was our son. He was not intubated as we had feared and been told would probably happen. He was crying. Prince Charming said he had never loved the sound of a baby crying so much. Not only was he crying but he was WAILING and had been for awhile and he wasn't even turning blue! After we kissed him hello they took him to get set up in NICU and the surgeon came to talk to us. Mostly we recieved good news...some wasn't as good as we hoped but bottom line was good news.
First Elijah had Laryngo Malasia (sorry probably not spelled right), or a webbing holding down the voice box which meant his airway was very narrowed. They were able to correct this by cutting the web. they showed us pictures and it really opened up the airway a lot.
Second, Elijah has a paralyzed left vocal chord. Now this is the kind of bad news since there is nothing they can do to fix it. However, it isn't neccessarily paralyzed forever...the nerves may heal and he may get function back. This is what we are praying for. Either way though, the surgeon reassured us that at SOME point the other vocal chords would compensate enough that that one vocal chord would not collapse his airway as much and he would be compeltely normal. Able to cry, sing, play sports, everything a normal boy would do without any trouble. It just might take time. The surgeon reassured us that when he is older we will be able to say "Oh yeah, we remember you had all that trouble breathing when you were born but you're fine now." Also they reassured us that even when he does cry so hard that he looses oxygen...worst case scenario he passes out and the airway reopens and he can breath again. This is a huge reassurance to us. Also reassuring was that he cried for a LONG time and his oxygen only dipped into the 70's. Which was WAY better than before when he would dip into the 40's fairly quickly and need to have oxygen. If he can cry like that right after surgery with all the swelling and soreness we hope this means that once he recovers from surgery he will be strong enough to go home.
Basically now it's a waiting game. Here are our prayer requests for this part of the journey:
That Elijah will recover very quickly from surgery. That the swelling will go down, the sore throat will go away, the cuts will heal well and not scar, and he will be able to eat and make noise very soon without pain or sounding so horse.
That once Elijah recovers from surgery he will no longer desaturate so low when crying and will be able to come home. Hopefully this only takes a day or two. This is our prayer.
That Elijah's vocal chord will heal and not stay paralyzed. Hopefully now that it has room it will heal. If not we pray that the other ones will VERY quickly learn to compensate so that he can be normal and healthy.
That we would have health, energy and strength to continue to this journey and that hopefully it will be over sooner rather than later.
That Alliana will feel loved and special even though we will still be gone a lot.
That we can all be a family at home soon.
Thank you SO much for all your prayers and support. God is mighty to save! Thank you for praying!