Decisions...

Everyday we make decisions and with decisions comes many questions....especially the what if's....

After the test was conducted, Alayna settled back in and went to sleep. I remember going home so confused. Andy and I had discussed transferring Alayna to a different hospital and it was left at that. The thought of moving her scared me and I didn't want to think about it. As I was fixing dinner, Dr Schneider called....

He went over everything that had happened the past 2 days, what the test meant and what improvements Alayna was showing. De Schenider then suggested an EMG. He stated that this would let us know if Alayna had a neuropathy (nerve disorder) or a myopathy (muscle disorder). He stated that they usually don't do these on kids so small. Alayna was still under 5lbs, she was not growing as a baby should. Dr Schneider also mentioned a possible move to St Louis Children's Hospital. He said that they see more of these cases and have better testing. We also came to the conclusion that St John's was not working out for her anymore and we needed doctors who knew more. He had also been in contact with a neurologist in St Louis about Alayna, Dr Anne Connelly. Now all Dr Schneider had to to do was to get St John's on board. We decided before we made a final decision we wanted to see what more tests could be done here. It was also a thought that Alayna would do tests in St Louis and then be transferred back. The thought of leaving our nurses scared me but I also wanted my little girl to get better.

The next day on June 3rd, Alayna gave us a HUGE scare. She turned completely purple and her heart rate went down to the 30's. All I could do was pray, pray that she would be ok. Nurses rushed in. They suctioned her and bagged her. It was one of the most scariest moments of my life. Within seconds, felt like hours, Alayna was back to normal, pink and sleeping! We have no clue what happened, and this wouldn't be the last time this happened.

Alayna had to be reintubated a few days later. Her tubed had moved and she wasn't getting the proper oxygen to both lungs. Alayna had to be reintubated a lot. For one she hated being on the vent and would wiggle the tube out of place. The next day we were told they were going to conduct the EMG test, the next day, Tuesday. They had found  a doctor in Springfield who had done this on babies as little as Alayna.

At 4pm on Tuesday June 8th the test began. They had us wait out in the waiting room while it was being done. I wanted to be with my baby, I didn't know if this test would hurt or not and I wanted to be there to comfort her. Alayna had already showed us she had a temper and I didn't want it to flare! About an hour later they called us back to her Pod, (Pod F), to discuss the test results. The doctor that conducted the test didn't realize she was so small so he did mention that the results may not be 100% correct.

The test showed that she had no neuropathy or myopathy and possible Congenital Myasthenia Syndrome. Ok we were a step closer to figuring this out! Afterwards Dr Crouse (spelled wrong in previous post) came and spoke to us about St Louis. They had ok'd the transfer on St John's end and just waiting for St Louis to say ok. Wow we were really probably going. I didn't know what to think. What would this transfer do to Alayna? Is she stable enough to leave? Will they give us answers. A million questions were running through my head all at the same time.

On that Friday we had gotten a few DNA tests back and they all came back ok or negative. I really don't remember what they tested for but I remember they were bad things. We were very thankful those came back ok! Alayna had another purple spell. They also had to change her tube again because she had a small air leak, this was causing vent settings to be higher than they should because of it. Slowly but surely she was coming down on oxygen and pressure! This was great news. Dr Crouse said this is a sign that she is getting better and her lungs were starting to grow!!

The whole weekend we waited to hear if we would be going to St Louis or not. We had to make plans, get the house in order. We spent all weekend discussing where we would stay and how we would get by. We decided we would put our names on the Ronald McDonald list and stay at his Grandmas in Godfrey. The hospital was about 45 minutes away. Way too far for me, but what else would we do? Our daughter needed the best care, we didn't care about our inconvenience, her health came first.

On Sunday June 12th we were told Alayna was going to St Louis on Tuesday!! It was still unsure of we would just go for testing or stay until it was time to go home. The next 2 days were very nerve wrecking. We were told she may go by helicopter and St Louis has their own transport team. St Louis transport team brings their own doctor. On Monday we found out we were leaving at 8am by ambulance on Tuesday and St John's would be doing the transport. One of Alayna's nurses (Jenny) would be going with us! This would help a little bit with our nerves! Monday night I cleaned up all of Alayna's things. It was a very sad time. We had only been there 4 weeks but we formed bonds with our nurses. Alayna had pictures everywhere. Her nurses would always run and grab the camera when she had her eyes wide open! This mama could not sleep at all that night!

And so our new journey began on June15th, also my husbands birthday!

Untouchable Dreams

Last night as I rocked Alayna to sleep, I though to myself, how many moms dream of this moment? How many moms lost this moment and can never get it back. This was a dream that seemed like it was an eternity away, a dream that may never come...


After 2 weeks of being in the NICU we still had no answers at all. The doctors had performed a head ultrasound and an EEG, all came back fine. After we held Alayna she seemed to be doing much better. She would know when we were there and when Mom and Dad would talk, she would respond. How could I even think of letting this child go? As the days passed Dr Schneider came to us about a drug he could test on Alayna. A possibility that it would make her better. He thought she showed a lot of signs of Congenital Myasthenia Gravis. Sometimes mothers have this and pass it on to their children, so he had me take a blood test and do another test as well. Dr Schneider stated that I did not look like I had it and did not show any signs, but Alayna could still have this syndrome. I thought to myself this is good, hopefully this is our answer. This is a 100% manageable syndrome with medication. I hated the thought that she would be on medication for the rest of her life, but if it gave her a full life, let's do it!!


I now know why they wanted us to bring clothes in! They wanted to see if Alayna could maintain her own temperature and with us holding her it will give them an idea. They took her temperature before and after, and all was great! So now we can finally dress our little girl. So many parents take the little things for granted. This was a big deal to us and in the right direction! 

On June 1st the doctors decided to conduct the 1st test. They were going to inject Alayna with neostigmine and she should show drastic changes after about 15 minutes. Now there are side effects to this medication. It could send her into respiratory distress, so the nurse had to put in an iv just in case she were to go into distress.  They would put a medication into her iv that would conteract the neostigmine.


I was oh so very nervous. Anytime something was done to Alayna, I would think to myself, she is so fragile anything could make her take a turn for the worse. In all the uncertainty I never once asked God "Why me?", it was always "Why Alayna?". This journey was not about us and about us living out of our car in the weeks ahead, it was always and always will be about Alayna. It didn't matter to me how uncomfortable I was or how I couldn't smile anymore. The only time I did smile was when I saw Alayna. There were a few times I prayed to God to give me strength to keep going and then after I thought about it I prayed to God to take that strength he was going to give me and give it to Alayna. She needed all the strength in the world.


The test had began. We were to see more spontaneous movement. Now In the 2 weeks Alayna was born she slept ALOT, her main awake time was at 2 am. Within about 10 minutes her eyes popped wide open!!! I started to get excited, but had to remind myself that this may not mean anything. She also started to move her arms more, but not her legs. Alayna has always had problems with moving her legs. Dr Schneider was watching the vent and watching her breathing. The ventilator will show when Alayna initiates a breath herself. Up to this point, she wasn't, she was letting the vent do ALL the work. He started to see the vent change, she was initiating more breaths!!! Of course the doctors in the NICU didn't see a change, but Dr Schneider wasn't convinced. So as the doctors saw it, this test was a failure so we will try again tomorrow. 


I was getting frustrated with the lack of support from these doctors and all the negativity. If it wouldn't have been for her nurses giving us hope, I probably would have cried 24 hours a day. So here comes June 2nd, the test time comes and goes and once again they say no changes. They even had 2 nurses come in and look at her and see if they saw any changes. They both said she is awake and moving her arms. This wasn't enough for the doctors to say it was working. Did I mention they didn't call Dr Schneider down for the testing? He was not thrilled when he came to the NICU and it was over. The next day me and Dr Schneider had an 1 hour conversation over the phone about Alayna....

Here we are again back to square one. Will we ever get an answer? Will my daughter be able to breathe on her own? And what about that untouchable dream of getting to rock my daughter to sleep? Will that day ever come? I loved her more than anyone in this world!


Happy Mother's Day to everyone! Although some Mother's today will not be able to hold their child or hug them or never got the chance, they are still a Mother, wish them a Happy Mother's Day!

Alayna's Journey

As Alayna's 1st birthday nears it is hard not to think of the journey we have been through and what the future holds. Many things happened while Alayna was in the NICU, many things that we did not tell anyone, not even some family members. We wanted to deal with these events privately. We always asked for prayers and we are very thankful for the responses we received from everyone. I honestly, to this day, believe that the power of prayer helped Alayna in so many ways. I am now ready to share these experiences with everyone and know that our NICU stay was definitely not a "normal" stay, we went through so many ups and downs. I sometimes look back and seriously wonder how we made it through everything and held on to our hope.

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.