Sunday, January 1, 2012

A look at 2011

I saw another blog like this and I thought it was a good way to showcase how much Alayna has grown over the past year. So here goes......


January 

February

March

April

May

June

July

August

September

October

November

December


I hope everyone had a safe new year and that 2012 brings everyone great joy, peace, and love!

Happy New Year!!






Monday, December 5, 2011

Our Hip Journey

When Alayna was born at 4lbs 10oz, she had these little rolls on her thighs. I thought to myself, "Why does she have those? She is so small with not an ounce of fat on her". Alayna was always big for her gestation, between 32 and 34 weeks she had stopped growing, thankfully she came when she did! I never thought too much about the fat on her thighs until later when she was diagnosed with hip dysplasia. Alayna also had Rocker Bottom feet. To me this was just the curvature of her heel, it looks like the bottom of a rocking chair. I didn't realize there was more to it. We were told as she got older and moved her feet more the "rocker" look would go away.

At about 4 months old Alayna's feet looked so much better, except they were kind of turning outwards. I remember one day walking into the NICU and saying she looks like a little ballerina. Her hips had turned outwards and her feet were all the way turned out, like a ballerina standing in the turnout position. Her physical therapist also noticed that the same day. So of course I started freaking out and asking the doctors about it. They had an ultrasound done of her hips and they diagnosed her with bilateral dysplasia, meaning both of her hips were out of socket. We had a consultation with an orthopedic surgeon. He mainly just stated to bring her back when she was released and we would discuss our options of correcting this condition. He stated that this was most likely from her not moving in the womb and she wasn't able to form her hips into socket also the same reason her feet were considered Rocker Bottom or Vertical Talus. Alayna's hips have always been very, very stiff and she has never been able to get her feet to her mouth. A milestone that many kids hit by a certain age. She always tried but just couldn't do it. I always wondered if it was from her muscle disorder or her hip dysplasia, it was confirmed that it was her hip dysplasia. Not all kids are affected like Alayna was.



Fast forward to after Alayna was discharged from the NICU...St Louis orthopedics would not see Alayna because of insurance reasons. We were referred to an ortho here in Springfield. Our first appointment they did x-rays on Alayna's hips and feet. Again they confirmed the hip dysplasia and vertical talus. This ortho told us that Alayna did not have any sockets, they never formed. That meaning she would require a very invasive surgery. They doctor wanted to do more research on her myopathy before deciding if she was going to do the surgery or not. Alayna was casted from her thigh to her feet, her feet being covered. There was a good chance this would fix her feet. It would take about 5 weeks, cast changes every week, and possibly surgery if the casting didn't work. Vertical talus was also described to us as being the exact opposite of Club Foot. They were pretty much fixed the same way as well. Alayna's right foot was only casted for 3 weeks and was corrected, great news! Her left foot went the whole 5 weeks and we were told it was better but not corrected. She would need surgery because if we left it as is, it would cause her pain. By this time her ortho explained to us that she would not do surgery. Alayna could still lead a normal life. As the doctor explained her reasons, I became very frustrated and honestly wanted to smack her in the face! She stated that there was very little chance Alayna would walk so why do it? Really? I want to give her every chance possible to succeed and that includes fixing her hips. She also said that there was a 99% chance that Alayna would die during surgery because it was so invasive and she was not even close to being healthy. Seriously, she was on oxygen for her lung disease not her myopathy. This doctor also wanted to clip her heel cord because it was tight from being in the cast, ummmmm no thank you. She was not confident in her own work so why would I trust her with such a simple procedure as clipping her heel cord. We left that office and never looked back.




I contacted St Louis and let them know the situation and they were baffled. Even her neurologist said she was good enough for surgery. So then we started the journey a finding an orthopedic doctor in St Louis. Alayna is on Medicaid and the orthopedic office at St Louis Children's does not except Medicaid. That is a total shock because every other department does. I do not like being state assisted insurance but without it we wouldn't be able to live. Alayna is truly a million dollar baby. Her NICU bills alone were over a million dollars. That didn't include all the supplies we needed at home, medications, and all her doctor appointments after being discharged from the NICU.

Thank goodness we had Donna! She is our Newborn Clinic Nurse. She is truly an amazing woman. After fighting with Children's for oh about 3 months she finally got us an appointment! Well it was cancelled 3 days before. I was very frustrated but really what could I do? She then got us another appointment about 2 months later, again cancelled. So about a month later she was told that there was no way they would see Alayna. She called me and told me the bad news but said we can schedule you an appointment with Cardinal Glennon with Dr Puryear. I went ahead and said lets get it done, there was nothing else I could do. So the appointment was scheduled for the next week. As soon as I hung up with Donna, the ortho department at Children's called and said that they would see Alayna. Oh come on! I told them we were told by the Director she would not be seen. The receptionist said she knew about that but all we needed was a referral from her pediatrician and they would see her, and she was sorry about all the confusion. We had gone through 6 months of back and forth. That appointment was scheduled for 4 weeks later. I called Donna back and told her what was going on. She offered to cancel the appointment at Cardinal Glennon for us and I told her to lets just keep it and see what they say in case our appointment gets cancelled again.

I was very nervous for our appointment. I had become so comfortable with Children's that I really didn't want another hospital doing her surgery. They didn't know Alayna. Plus our first ortho had me scared out of my mind. Dr Puryear was AMAZING!! He came in and picked up Alayna and started playing with her. He said that she did have sockets so that was a plus. What the heck was that other doctor talking about????? He said that he hip dysplasia is a neuromuscular hip dysplasia so we would try a closed reduction, usually there is a very high success rate with kids with myopathys. She would need to be in a cast from her chest to her feet for 12 weeks. A closed reduction does not involve any cutting. The procedure consists of doing an x-ray and guiding her hips back into socket. We were told that if he couldn't get them in he would stop surgery and go on to the more invasive surgery, osteotomy. He didn't want to do an open reduction, involves cutting, and then have the chance of doing an osteotomy in the future. He also stated that her heel cord did not need clipped and her left foot looked good, it would not cause her any pain. So the surgery was scheduled!

The day of surgery I was a nervous wreck. Alayna had to go back on the vent for this. My fear was that she would not come back off with her lung disease and pulmonary hypertension. Even though she was off oxygen she still had these issues. Her newborn doctor with Childrens gave us a "stress" dose of steroids to help with her coming back off the vent. We arrived at the hospital at 6:45 am and started getting everything going! About 30 minutes after Alayna was wheeled back into the OR room the nurse called and said Alayna was sleeping and doing great and the procedure was getting ready to start. I swear every time that phone rang in the waiting room I jumped! 25 minutes after we got that call Dr Puryear came into the waiting room. He told us that he could not get her hips into socket so he went ahead and stopped the procedure. Dr Puryear also said that he wanted to wait until she was 2 and we would do the osteotomy. Alayna was off the vent before she left the OR room!!! All that worry for nothing! The recovery nurse said she was given a lot of sedation and doing very well, she doesn't see kids do so well with as much sedation as she had. When Alayna was in the PICU we were told they had to keep switching her sedation because it wasn't working for a long amount of time. The doctor said she must have the red head genes because so many red heads are that way with sedation. We had to stay 1 night in he hospital because Alayna has sleep apnea and sedation makes it a lot worse. We were not happy but what is best for Alayna is what we will do! We were discharged the next morning at 7 am! Those doctors do their rounds early! I have never been discharged so fast!

We went and saw Dr Puryear a month later for a follow up. I figured it was just to pretty much tell us he will see us back when Alayna is 2! Well the resident came in and started telling us about the surgery and to call and schedule in a few days and surgery will be in a few weeks.  I was very confused. So the doctor came in and said I think she is healthy enough, we should do it now! I came home from that appointment very excited and very scared at the same time. Our first orthos words kept ringing in my head, she is going to die. We scheduled surgery and it was 6 weeks later. I scheduled it later because we were supposed to take another family vacation to Florida but that changed because my car needed fixed.

This time we didn't have to be at the hospital until 7:45 am. The whole drive there I was very nauseous and trying to keep my cool. I didn't want Andrew to see me freaking out. We talked with the anesthesiologist and she was wonderful and she helped calm my nerves! I made sure I told Dr Puryear to take care of my girl. Little Gracie (I call her Gracie a lot!) was wheeled off and we were told to go eat because they wouldn't be starting for at least an hour. We got the call that she was out and surgery was starting. Surgery was to last 5 hours. Dr Puryear also stated that he would do the first hip and see how she was doing if she wasn't doing well then he would stop and that leg would be done at another time, if she was doing well he would continue to the next leg. This surgery would consist of shaving her femur and pelvic bones plus other cutting of tendons and muscles. There was a great risk that Alayna would need a blood transfusion because of the bone shaving.

Not even an hour into surgery and we get the call, everything is going great and in about 30 minutes they would be starting the 2nd leg. I was so grateful, everything was going great! After everything we were being told, it was going great! Surgery only last 4 hours. The doctor came out and told us that he femur bone did not need to be shaved and her hips went in perfectly!! Alayna woke up from recovery very out of it, she also came off the vent once she hit the recovery room!! We were told that we would be there 2-3 days and not leave any sooner, so we were expecting a very uncomfortable, long stay. Alayna did not sleep well at all, we gave her morphine and I will never give her that again. Her oxygen saturations would go down to the mid 80's and that is not like Alayna. Now when she was on oxygen that was completely normal. She was also on valium as well. She slept for no more than 2 hours at a time. The next day the Dr Puryear's nurse came in and said she was doing great, better than most kids do after this surgery. So we were given the chance to go home early and we took it!



The first few days were very tough. Alayna was so doped up on valium and tylenol with codeine. She even needed oxygen one night because she was so out of it, thank goodness we had the supplies! So the valium stopped that day and the codeine went to half her dose, every 6 hours instead of every 4. This spica cast has taken a lot to get used to. Alayna absolutely hates it. She had her follow up appointment 3 weeks later. Well about 3 days before her appointment Alayna had a little issue with diarrhea and it went all through her cast, oh it was so gross. So they decided to do a cast change that Thursday. They do cast changes in the OR room with sedation. So here we go again! We were there at 5:45 am and were gone by 10 am! This sedation did not require the ventilator, thank goodness, she was wide awake when she was wheeled into the recovery room! She gave me the biggest hug in the world!




Alayna is finally adjusting to life in her casts. She still tries to sit up all the time and gets very mad when she can't do it. She can roll from her belly to her back and turn in circles in her cast. When the cast change was done we were told her hips look great and that she would not need the extra 6 weeks in her casts. Her scheduled date to have her casts removed is December 22nd, such a wonderful Christmas present!!! Cast removal also requires sedation, so one more trip with the sedation and hopefully we are done! I am very thankful to God for Alayna and everything he has done for her. Our first ortho made this surgery look like the end and she made it through! I would love to take Alayna up to her office and throw it in her face! But I am a bigger person and will just dream about it! I am also very thankful for Dr Puryear, he is a wonderful doctor!

I hoping this will open the doors for Alayna! She was walking in her walker before. She could not stand unassisted because she was very unstable in her hips and I think this will help her tremendously! I also think it will help with her crawling. I am going to try to update this blog with more recent events and past events. I don't have much time on my hands anymore!

Sunday, June 5, 2011

St Louis here we come!

We arrived at the hospital at 7 am on June 15th, 2010. We had only gotten about 2 hours of sleep the night before. I was very nervous about this departure. Most of our family came the night before to say their goodbyes to Alayna. My mom was at the hospital before us that morning! Alayna was sleeping peacefully and had no clue what was going. Missy was her nurse that day! I was so happy to see her that morning. Missy was her primary nurse and was gone all weekend, I was glad that she was able to send her off. Her other primary nurse Jill had been gone since Thursday and didn't work until 7 pm, long after Alayna was gone. Jill had no clue at all we were leaving. It was hard to leave without saying goodbye to her.

At about 7:30am they brought in the transport incubator. That is about the time that I lost it. This was real, it was really happening. I was scared for my daughters life. We were told that transports can do a lot of damage to a baby in such a critical condition. My hope overruled my fears, I knew this transfer was best for Alayna and she needed all the help she could get.   As we started to pack up the last few things at Alayna's bedside they started to get the transport vent and monitor ready. I gave my little girl a kiss and told her I loved her very much and into the transport incubator she went. She just looked around everywhere, like, "What is going on?".

Jenny would be her transport nurse, which was great, Alayna had a temper and you had to know her to get her to calm down, and Jenny did! We headed down with Alayna in the elevator and outside the ambulance was waiting. They put her in and I waved bye. My Mom stayed with the ambulance until they pulled out of the hospital. Andrew and I sat in our car waiting to follow them. We decided we would follow them the whole way down so if anything happened we would know. We had taken off the DNR about a week earlier, so if they needed to save her life during this transport they had the "go ahead", I won't mention how we had to fight the doctors for 2 days to have that DNR removed.

At 8:26 am we pulled out of St John's Children's Hospital and headed to St Louis. It was a bright beautiful sunny day, not a dark cloud in sight! It was a day when I actually noticed outside and wasn't in zombie mode. I cried for about the first 15 minutes and then told myself, "Alayna will make it!".  About 9:30 I got a call from Jenny. My first thought, "What is wrong?, What happened?". The first words Jenny spoke was, "She is doing great!". Boy did that settle my nerves. Alayna was wide awake looking around sucking on her pacifier. She loved that pacifier! After we hung up I started crying again, God was answering our prayers, she was doing great!

The ride was a very smooth ride with no complications at all! We arrived at St Louis Children's Hospital at 10:11 am! We made it, now we had to figure out where we were going and what we were to do. We went to the emergency room where the ambulance pulled in and told them our daughter was being transported. They took us upstairs and to the information desk. They had already had our info but not Alayna's name or her room number. We got our badges and then were directed to the 5th floor. This hospital was so big, I was so confused and nervous!

When we got off the elevator to the 5th floor there is an information desk and we told the clerk why we were there and our daughters name, out came the packet of rules! There rules were so different than St John's. They gave us the number to the NICU and if we wanted to check on Alayna we had to use a 4 digit parent code that they assigned you, how would I ever remember that, I call every 10 minutes when I am gone! At St John's you just call back to your child's pod and you got their nurse and you were updated. They did this at St Louis to verify you were the parent, after the receptionist verified the code then they would page the nurse. We also had to sign in everyday, for the first couple days we signed in as Krista and Andrew, then it turned in to Mom and Dad. St John's you never had to sign in. There was also a visitor book, we had to fill in who could visit Alayna without Mom and Dad being in the room or even in the hospital. At St John's no one could visit unless Mom or Dad was by their side. This was a big change but kind of nice. Also the receptionist would call back to see if it was ok to come back, St John's you called back yourself and asked.  There was one similarity, you had to get permission first to visit your baby!

All this info went in one ear and out the other. My main concern was Alayna. I had no clue if she was ok and what was going on. Tanja (the receptionist that day) called back and they stated Alayna was in her room and they would call us back once she was settled. We saw Jenny and the respiratory therapist walk out. They told us she was doing great and not to worry! That help settle my nerves for about 15 minutes! While waiting we talked with a social worker. We were out on the waiting list for the Ronald McDonald House and a mother that breast feeds gets 3 $4 vouchers a day to be used in the cafeteria, healthy mom, healthy baby.

Finally about an hour after we got to St Louis we were allowed back to see Alayna.....

Friday, May 20, 2011

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.

video

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!

Sunday, May 8, 2011

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!

Friday, May 6, 2011

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.