On May 14th at 1:59 am Alayna was born weighing in at 4lbs 10oz and 17 3/4 inches long. She was born at 34 weeks, 6 weeks early. When Alayna was born she made tiny little noises, the sweetest noises I have ever heard. I heard the nurse practitioner saying she was breathing on her own but requiring a little bit of oxygen. They had a full team of nurses, we knew something was going to be wrong when she was born. She also did not move her legs in the womb, thank goodness the nurses were there. We were told we couldn't see Alayna for about an hour or 2, we had to wait for them to get her settled in the NICU. Dad was able to see her first, I was still numb from my epidural. These are some of the 1st few pictures taken...
When Andrew got back from visiting with Alayna the NICU doctor that admitted her, Dr. Nimavat, came with. He told us that by the time they had gotten upstairs with Alayna she was not responding at all and that is why she had to be ventilated. Then came all the bad news....She was not moving, very stiff, pulmonary hypoplasia, high arch palate, clenched fists, vent dependent, low set ears. It all seemed like a dream to me, I couldn't understand a word he was saying, except, "It doesn't look good.". I was completely devastated, we had just lost our son at 32 weeks the past August and now they were telling me I was going to lose my daughter. I begged God not to take her, take me, but please not her.
I finally got to see Alayna once my epidural wore off. She was so beautiful and yet so helpless. I remember her nurse that night, Jill, she ended up becoming one of our primary nurses! She had told me that Alayna gets very fiesty when she would get her diaper changed. I still think to this day it was because her legs were so still from not moving them for at least 4 weeks. Jill also explained that she was on low vent settings and 24% o2, we breathe 21%. This was encouraging news to us, but we were also told the 1st 48 hours are known as the "honeymoon period". Remember this because the doctors kept telling us this, weeks after she was born.
On May 15th at around 4 am I was woken up by one of NICU doctors tellings to "Go upstairs and say your goodbyes, she doesn't have much time". I am completely hysterical and call my mom, she rushes to the hospital to be with us and my mother in-law was already there, she had stayed the night. Now in St John's NICU they have Pods with 6 beds in each Pod, so no privacy at all. They had let all 4 of us come in, rules only permit 2 at a time and 1 being the parent. As we sat and cried, my husband and I prayed like we have never prayed before. The doctor explained that Alayna was now on an oscillator which is a higher form of ventilation, but at times, a more gentle form. She was on the highest settings on pressure and o2. I remember saying but she is at 85% and the doctor said "Yes, but she was at 100%". So I was confused, because to me that is better. Slowly through that morning Alayna started to come down on her o2. She started waking up and looking around.
We were living our lives as zombies, we were not eating or sleeping and all we were doing was praying for our little one and asking for prayers. At 8 days old we still had not been given any answers. We had a wonderful geneticist trying to figure out what was going on. They had mention Pena Shokeir, which is 100% fatal, no survivors past infancy. So on Saturday May 15th we spoke with Dr Batton to see if we had any answers. Before I tell what was said in our meeting I want to stress something. I have respect for those doctors because they kept Alayna alive for 4 weeks, but that is it. They are good doctors when they get something they know, but when it is out of the "norm" they don't know how to handle or even ask for outside help. I will say our geneticist, Dr Schneider, is an amazing man and he went outside and asked for help. Now in this meeting he said that Alayna was not going to make it and that we need to take her off of the vent. There is no hope for her and yes he was this harsh. That was pretty much all he said for about 30 minutes, but did let us know this is 100% our decision. When we got back to Alayna's pod she was not doing well at all. She was back up to 100% on her o2 and not coming down. They had lowered her oscilator settings and apparently she wasn't having it. They had to "bag" her, take her off the vent and give her manual breaths. . Now after everything had settled, her Dad and I had a little chat with Alayna. We told her that she didn't have to be strong anymore and that she can go with Jesus and her older brother Bryce and that we knew she was a strong little girl and that she gave the best fight someone can give. We came home and talked with family members and prayed and had decided Alayna will let us know when she was ready. We went back to the hospital and had them put a "Do not resuscitate" order in her chart. We didn't want them to harm her anymore and if she was ready then we didn't want to fight it and prolong her suffering. Within 2 days Alayna had become a different baby! She was following you, she was starting to wake up more often and tolerating touch much better. Also her o2 was down, but still on the oscillator. Her arms were moving more and she was starting to loosen up. I also want to mention that Alayna was never "floppy" as most myopathy patients are.
That Monday after we talked to Dr Batton we decided to talk with Dr Krouse. He had said by no means is he at the point to "let her go". I did like this doctor very much! He also mention the possibility of a g-tube because she was not tolerating regular feeds and had to be put on continuous feeds, she was getting breast milk. This would be something that would be done before we went home. Home? There was some hope there that we would be able to bring our girl home!
At 13 days old we were told that we needed to hold her because she wasn't tolerating setting changes and this isn't a good sign. Dr Khanna also mentioned that she needed it and so did we. The nurse manager told us to bring in clothes, for some odd reason this thought scared me. Did I think that meant she wasn't going to live? Why would we bring in clothes just to hold her? For us to hold her they had to take her of the oscillator and put Alayna back on a conventional vent and that she may not tolerate it so don't become disappointed.
They day had finally came, Alayna was 2 weeks old and we were going to hold her. I was so nervous and scared. I kept thinking to myself what if she passes away from us holding her, how could I be so selfish to risk my daughters life just to feel her warmth and hold her close? We had a wonderful nurse that day, Sue, our normal primary was not there, Missy (we love her dearly). The "troops" were called in to do this exchange from vents and to hold her.
We did it, we held her and she was doing great!! She loved the conventional vent and was doing great. Unfortunately Dr Batton came by and checked to see how she was doing and respiratory said she was doing very well, he said put her back on the oscillator. Seriously? Why? There was no reason for it. Thank goodness Dr Khanna was standing right there and said let's see how she does and get a gas in a few hours. We someone has respiratory issues daily blood gases are drawn, sometimes hourly or so on. They check to see if the carbon dioxide is being pushed out of your system. This lets the doctors know if some of the vent settings are correct. Of course her gas was greater than it had ever been! So she stayed on that vent and we never looked back!!!
This is just the 1st 2 weeks of Alayna's little life. There will be more to come. Thank you for reading and thank you, thank you, thank you for your prayers.
Stay strong Alayna!!! Thanks for sharing Krista! When reading your story I am brought back to my son's beginning. This is a great way to stay grounded, keep your thoughts in motion and a positive way to process crisis. Stay strong, breath often and smoother each other with the power of LOVE!!!
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