March 31, 2016

An Honest Conversation With The Neonatologist

A few days ago David and I pulled one of Aiden's neonatologists aside and asked her a few questions that have been weighing on our minds.

One of the biggest fears we've had is if there would ever be a point that they would say "this isn't working" and pull the plug on him. Especially if the geneticists come back and still insist he has a type of dwarfism that doesn't sustain life.

I felt a huge wave of relief when she assured us they wouldn't pull the plug on him. As she put it, so long as his heart is beating, they will be fighting alongside him.

She explained to us the only concern we should have is if he's not able to get off the type of ventilator he's on now. But preemie babies that are intubated like him take a long time to develop strong enough lungs to come off this specific ventilator. And preemies that are intubated and have pulmonary hypertension like him take a really long time to come off this ventilator. She then assured us that she's got plenty of time for him.

She told us he's on an upward trend, and following a path that they would expect a baby like him to take. And also mentioned that if his body was going to give up and not want to survive, we would have seen him decline by now.

We also have options for the future. If he needs more long term support for breathing, he could be sent home with a tracheotomy. If he needs help eating, he can have a G-tube. She said that even those would be temporary and knows of kids that pulled out their g-tube, it closed itself off, and the kid didn't need it put back in. Another patient of hers heard her own voice through her trach for the first time, got so excited she yanked it out, and was completely fine so she chuckled at the parents and said "no use putting it back!".

But she also reminded us that this is going to take some time. When we said we'd love to bring him home for Melodie's birthday in July, she replied with "hmmm, maybe.".

So our goals for long term and getting him home is controlling his pulmonary hypertension, and getting him off that ventilator. A part of me prays he won't be in the NICU by July. But another part of me realizes that he wasn't supposed to survive, so a few months in the NICU to keep him forever isn't that bad of a trade off.

March 29, 2016

Doctor Dolls: More Presents From Aiden

We are so blessed and lucky to have Aiden at Primary Children's Hospital. Their Sibling Support program is one of the best things we've experienced.

The girls got another gift from their brother. This time he gave them a little patient doll wearing a hospital gown. Included with the doll is a doctor kit with some of the items they use to take care of Aiden.

He also sent his sisters a letter that tells them he loves and misses them. 

The girls loved it and totally believed Aiden sent them the letter. And they love taking care of their baby that's sick in the hospital. 

These little gifts have really helped them cope with the stressful situation we are in. It has added a fun element to having their baby brother in the NICU. And it seems to really help them realize there is indeed a baby that came out of mom's tummy.

March 28, 2016

Rough Day For Mommy

Since we are now considered parents with a "terminally ill/disabled child", David and I have been assigned our own doctor and Chaplin through the NICU. They are solely there to provide us with emotional support and help. I think it's great they have this program. Deep down I know we need someone to talk to and help us through this.

We finally sat down and talked to them last night. And of course, just like all good psychiatrists and Chaplins, they were casually chatty with us at first - but before we knew it David and I were both sitting at Aiden's bedside crying.

They brought so many emotions to the surface that I've been trying to bury. Feelings of guilt that I'm not a good mom right now as I'm split in two, feelings that this is my fault, and feelings of uncertainty for the future. Now that they are no longer buried, I'm having a rough day.

I've tried so hard to be strong and positive through this. But today I'm feeling very lost. And feeling this lost is making me panicky since we are only 2 weeks into this journey. I'm beginning to wonder how I'm going to get through this.

I keep telling myself I did nothing wrong and this isn't my fault. I know that logically it can't be my fault. But I can't seem to shake the feeling that I did something to cause my poor little boy to suffer this way. The fact that the geneticist is so interested in the line on my hand terrifies me. What if I am the carrier of the mutated gene that caused all this? The fear that  it's possible keeps me up at night. I pray I'm not the carrier. I don't know how I'll be able to live with the guilt if it's indeed from me.

Having a baby in the NICU is something I wouldn't wish upon even my worst enemy. It is an awful experience to live through.

I keep reminding myself that they had to perform CPR on Lydia twice. And she's still with me and as bubbly and vibrant as ever. 

The NICU rollercoaster has started again. Aiden isn't having a good day either. Thankfully he hasn't dipped down as low as his last bad day, but his ventilator settings have had to be brought up. His red blood cell count is low again, so his third blood transfusion has been ordered for this afternoon.

His right lung has collapsed again, so they propped him up on his side to help take off the pressure and open it back up. When he's propped up in that way, he gets agitated and his CO2 levels go up. It seems to be this loop of events that snowball off each other. And they have usually started around his lungs collapsing and not being able to sustain themselves.

It's on days like today that I have to remind myself that we need to take things one day at a time. I can't try and look too far into the future or else I feel like I'm going to have an anxiety attack.

Positives of the day:

- His swelling looks even less today. Especially in his head. His skull is appearing more and more! In fact he has lost a total 100 grams in weight so far. Any other baby that would be a big concern, but with him that's awesome news. 

- Now that the IV in his hand went bad and they took it out, he has a free hand I can actually hold. When he hears my voice he reaches out to me, and holds my finger so tightly. I'm sure he feels the same level of comfort that I feel when we get to have that small connection.

- The nurses figured out that he loves to have his head covered. It seems to give him a sense of security and helps him stay calmer.

- His squishy old man face is to die for. 

March 27, 2016

The Best Easter Present

Happy Easter!

We spent the morning with the girls checking out what the Easter Bunny brought them. They were worried the Easter Bunny wouldn't know we are staying at the Ronald McDonald House (or old McDonald house as the girls call it), so they were very relieved to wake up and find out he found us.

I was very humbled to enter the cafeteria and find a family serving breakfast for everyone. What a sweet sacrifice and selfless gesture to be here on Easter morning. The mood in this house can feel very heavy at times. But today everyone seemed a little more cheerful and I loved observing the kids around us excitedly eating their french toast and gathering the Easter eggs they hid around the house. It felt as if everyone here had a breath of fresh air.

When David and I got to the hospital, we had a nice Easter present ourselves! Aiden was wide awake and spent a fair amount of time looking at us and reaching out to us. And when he could no longer keep his eyes open, he still wiggled as we talked to him. This will be the 3rd time he's been awake enough to interact with us, and I can't adequately tell you how much I look forward to these small moments with him.

We were also shocked at how tiny he looked! He pulled out another set of huge diapers and his swelling has gone down significantly. You can actually see the outline of his skull! His decreased puffiness and mere 13 inches in length is making him look more and more like a tiny, little doll. This mom may or may not be a little obsessed with it.

He's been such a rock star the past few days. We haven't had any episodes of D-sating, and he has kept his stats steady. His medical team gave him some restful days and he definitely needed them.

We are being realistic. We know that he is going to have some really good days, then he'll have a rough day, and will need to climb back up again. At this rate we are hoping by next week he'll be ready for the extensive xrays needed for his genetic testing. We are feeling the most anxious for that to happen so that we can begin to prepare for him.

Today I'm feeling especially grateful for my Savior and his atonement. I'm grateful that my family is eternal. And I'm very thankful that my little boy is here with us. I found out recently that while I was in my c-section, the nurses had my parents and mother in law calling funeral homes. My testimony of eternal families was the last thread I had to hold on to during those very dark times. And while I'm relieved I could move on and hold on to a different hope, I'm glad I had that knowledge to hold on to. It strengthened my testimony and showed me just how important having an eternal family is. If it weren't for our Savior dying for us, I wouldn't have had that last glimmer of light to hold on to. This will be an Easter I will always remember.

March 25, 2016

Aiden's Diagnosis: Skeletal Dysplasia, Achondroplasia, and Achondrogenesis

I'm in no way qualified to be discussing medical terminology. But as I started this journey with Aiden, I searched the internet daily to see if anyone went through something similar to us. I was desperate to find even a glimmer of hope, and I couldn't find much. My greatest wish is that a mom (or dad) that is struggling through a similar situation can find some comfort here.

When we went into our 20 week check up, David and I were thrilled to find out we were having a boy. But when my ob walked into the room with his laptop and asked us to sit down, I fell real fast from cloud 9 and had a sinking feeling something was wrong.

He went through each ultrasound image with us and explained what he was seeing. His body seemed to be measuring where it needed to be, but his arms and legs were measuring 4 weeks behind. He gave us a possible diagnosis of Skeletal Dysplasia, and referred us over to Maternal Fetal Medicine. He said they have more powerful ultrasounds there, and perhaps their measurements were off and all was fine. I'll admit I hoped and prayed his measurements were off and we could move on with a normal-sized baby.

Skeletal Dysplasia is an umbrella term for what is more commonly known as "dwarfism". And there are 100's of diagnoses that fall under that, depending on the measurements and ratios of the skeletal structure.

It's caused by a gene mutation that affects the baby's ability to turn cartalige into bone while in utero. Sometimes a parent can carry the mutated gene and happen to pass it on, but it can also happen randomly.

(Side note - David and I plan on getting testing done to see if one of us carrys the mutated gene. Interestingly one of the physical signs of dwarfism is having a single top crease on your palm that stretches from one side to the other. One of my hands has one of those lines, so the geneticists wonder if I'm carrying the mutated gene. See pictures of my hands below to see the line I'm describing.)

At our first appointment with Maternal Fetal Medicine they confirmed all of his long bones (each bone in his arms and legs) were indeed measuring short. They were all about 4 weeks behind the rest of his body. His stomach and head size were measuring correctly for his gestational age. And although the sizes were off, his bones were formed correctly and didn't appear to be brittle or too soft. This led them to think he could have a diagnosis of Achondroplasia Dwarfism under the umbrella of Skeletal Dysplasia.

Achondroplasia is, as our doctors told us, the most common type of dwarfism. (Think Peter Dinklage) A part of me is ashamed to admit this, but for awhile I grieved at the thought of having a child with dwarfism. I knew I would love him just the same, but I didn't want him to experience any difficulties in his life. It's not something I ever expected and I definitely had to take some time to warm up to the fact.

As our appointments went on, the size of his chest fell behind as well. They grew very concerned that his lungs wouldn't have room to expand and work when he was born. He also started to develop what's called Hydrops. Hydrops is when fluid begins to collect and pool around his organs and under his skin. It's extremely dangerous to babies and the doctor graciously announced that hydrops has a high likelihood of killing a baby in utero.

These new developments led them to a possible diagnosis of Achondrogenesis type 1a. This basically means a type of dwarfism that isn't able to sustain life and is considered "lethal". Although they couldn't give us a precise diagnosis for either Achondroplasia or Achondrogenesis, they recommended I terminate the pregnancy. They also predicted that if Aiden even survived life in utero, the longest he would live was about 3 hours since his chest size continued to fall behind. Every appointment they recommended we terminate the pregnancy. Every appointment they reminded us that they doubted his lungs could support life. And every appointment another piece of me felt as if it died.

I went on to bed rest when I was 28 weeks pregnant. I was at a high risk for preterm labor due to Lydia (my second child) being 5 weeks early herself. And I developed Polyhydramnios (high amniotic fluid count) due to his inability to keep up with swallowing and regulating the amniotic fluid. This is also very common with a child that's diagnosed with Skeletal Dysplasia. Their bodies can't keep up with the normal amount of amniotic fluid the mom produces. I knew that bed rest would keep him in there as long as possible so he had a chance to keep developing his lungs.

And I got HUGE. No really, I looked like I was going to have twins. When they broke my water during the c-section they caught a gallon of fluid. And that's only what they caught! It splashed onto the floor and soaked my hospital gown and the bottom of the doctor's scrubs.

At each appointment his long bones and chest fell more behind in growth. And with each appointment the more I believed he wasn't going to make it. But I still refused the offers to terminate the pregnancy and told the doctors that not only do I not believe in that, but I was going to give him a chance to try.

We had a meeting with a neonatologist before his birth and outlined when we wanted them to intervene with oxygen, intubation, and resuscitation if needs be. And we outlined at what point we wanted them to stop and let him pass away peacefully with us. That was the hardest conversation I've ever had and hope I never have to do that again. But I'm thankful we did it beforehand so that when he was born there was no confusion. Everyone knew what they needed to do to try and get him breathing quickly according to our wishes. And of course, the reason David followed him to the NICU was so that he could tell them to keep resuscitating him if he felt it was right, or to tell them to let Aiden go if that's what he needed.

We gave him a chance, and trying is exactly what he's doing! He's now been alive for 1.5 weeks and is fighting like a champ. We just have to hope and pray his lungs can grow quickly so he can support his own life eventually. But he has already been going down on his respirator, and has been trying to take his own breaths in between the respirator breaths more and more. His lungs seem to be opening up, and his body has been flushing out the fluid from the hydrops really well.

We still have a long road. We still need to complete his genetic testing to get a clear picture of what his quality of life and needs will be. But quite frankly, we don't care what his "quality of life" will be. We will take care of him and love him all the same - if not more for it! So far he's beating the odds and showing all those doctors that recommended terminating him what's what. We look forward to sending a real nice letter with lots of pictures to all those doctors one day.

My left hand - one line at the top of my palm that stretches across my entire palm. This is a physical sign of dwarfism. Perhaps this could explain my petite frame? I'm very curious now!
My right hand - has the more common upwards-slanted line at the top of my palm that only stretches to about midpoint. This is considered "normal" and most people have lines in their palm like this.

March 24, 2016

Toy Helicopters and Lower Numbers

Aiden has finally made some good improvements today! He had a nice quiet night, one xray and ultrasound in the morning, and a quiet rest of the day.

They put him on a different type of sedation that is a continuous stream of medication. We think this will help him a lot. The idea is this way, he can be more comfortable. He won't start to panic as he begins to come out of his sedation between doses. He'll be pretty zonked out all the time. A part of me is bummed that I won't get those small moments of him being awake for awhile, but I know that his body needs this rest right now.

His doctor told us his pulmonary hypertension is something he will have to deal with and take medicine for for the rest of his life. We aren't surprised to hear that. They did start him on Viagra for it today. We WERE surprised to hear that! His nurse told us that's actually what it was originally developed for. But when they noticed it made all the baby boys erect, they remarketed it for it's more well-known use. The things you learn in the NICU...

His blood pressure has been low. His doctor thinks it's from the morphine they've been giving him. But he doesn't seem to be in any sort of distress from it and behaves fine, so she is just going to monitor him closely for now. As she worded it, she'd much rather keep giving him morphine to ensure he doesn't have any pain. I made sure to thank her for that.

They started his feedings again today. For reasons I can't remember they had to stop his feedings for his blood transfusion. But that went so well they felt confident in beginning that again.

He's doing so well today that they have lowered his respirator significantly. His CO2 levels have been down, his oxygen needs have been less, and they have been getting a large amount of secretions out of his lungs. They think they are finally getting his lungs to dry out and open up. This news is so exciting! But we still have a long road ahead of teaching, growing and strengthening his lungs to breath on their own. And not to sound pessimistic, but we also expect his numbers to go back up again. The theme for the NICU truly is take one step forward, take three steps back. Slowly but surely he'll get there.

I'm amazed at the strength my little guy has shown! I have such a sense of pride for him already. He's my little warrior!

On a less serious note, the life flight nurses left David a present today at the NICU! All the nurses were surprised, apparently they have never seen them return with a gift for a Dad before. All day I've been teasing him by telling him it's because he acted as excited as a 3 year old boy about going in a helicopter. (And truly, he did. I've never seen my husband squeal and jump up and down the way he did that night!) My awesome hubby just has a way of being memorable! And what a fun gift to share with Aiden one day.

March 23, 2016

Helping Siblings Cope With The NICU

One of the suggestions our social worker has for helping siblings cope with a baby in the NICU is to exchange gifts. Since the girls aren't allowed to see him (and honestly we wouldn't want them to see him right now anyway), this helps them realize that there truly is a baby here.

As they have drawn him pictures and gotten him little gifts, we will take a picture of him with those things. Then we will take a picture of him with his gifts in return. 

The girls love it, and I think it really does help them cope and visualize what's going on. Especially with Lydia. At first she has been so confused about mommy no longer having a big tummy and constantly asked where baby Aiden went. After a few gift exchanges with pictures she has stopped asking where Aiden is and has started asking when he's coming home and if he's all better yet. 

The hospital is really great with providing little things for Aiden to give his sisters. They have given us premie diapers, bottles, and pacifiers for their own baby dolls. Today someone had donated receiving blankets, so we jumped at the opportunity and grabbed some for the girls. They were also giving away Easter eggs filled with candy. We told the girls it's an Easter present from their brother, and they were so excited to receive them. Both of the girls are sleeping with their blankets from their little brother. It warms my heart to have this little amount of interaction between all of them. 

The hospital plans on giving them more gifts from Aiden in the future. They have some really cute things they can do for the girls, so I can't wait to see what they get!

(In this picture, the outline of his actual head size and the line of fluid is very apparent. The good thing about that fluid is it's only between his skin and skull, there isn't any fluid in his actual brain. And while it'll take some time, the fluid will start to disappear. It's very bizarre. As they turn his head it'll move and settle around where he's laying. And not that we sit and play with it by any means, but it's almost moldable and can be moved around just by touching it. I'm glad he's sedated through all this because I can imagine his poor head would be so uncomfortable with all that fluid causing pressure.)

Starting To Climb Back Up

Aiden had a great night. His transfusions went really well and his color is so much better! He looks nice and pink, not pale and pasty. We are really glad they did that for him. 

But then he had a rougher morning. All of a sudden his CO2 levels went up again. So they ordered xrays and another echo to see what was going on. They saw that his lungs are still wet from the hydrops and his diagram is looking a little flat. This told them his ventilator is turned up a little too high and is pushing against his diaphragm. So they once again played around with the numbers. We hope to find his magic set of numbers soon. 

The echo showed that his heart is moving oxygen around more normally, but his pulmonary hypertension is still there. But it looks like the medicine for his hypertension is working well. He's been able to keep his oxygen levels steady and his CO2 levels have been getting lower as the day goes on. 

He D-sated again as they were doing the echo, but he recovered from it much quicker then other times. 

This afternoon once people stopped bugging him he was very calm and his stats were level. Looks like he is slowly starting to come back up after some really tough days. And thankfully his nurses and doctors are learning that he gets really stressed as things are done to him and are preparing him before hand by giving him extra sedation and oxygen. 

In fact today as they were preparing to take his xrays, the technician wanted to move him around. Before we could say something ourselves, his nurse and respiratory therapist jumped in and told  the technician absolutely not. The technician insisted those were her orders, but his respiratory therapist wouldn't allow the xray to begin until she called and asked if he had to be moved again. Turns out he didn't need to be. It feels good to know there are people there advocating for him when we aren't. 

We are getting a pretty good idea of what nurses and therapists we like and have started asking for them to be on his primary care team. We think consistency will be one of the biggest things to help him. 

If he can continue to improve and stay steady, we can get the extensive xrays done the geneticists need to begin diagnosing him. I'm feeling very anxious for that to happen. I want to start preparing for his long term needs and find out what his quality of life is going to be. But Aiden has to be able to stay calm and not D-sat as things are done to him before that can happen. 

Positives of the day:

- He is starting to do better after giving us more heart attacks! 

- We went to a parent support group today. All the parent's there had the opportunity to share the story of their baby, and everyone there had something terrifying. One baby's intestines developed inside its umbilical cord. Another was born with a hole in its abdomen and therefore its stomach and intestines developed inside the chest. Another family lives in Idaho, and their baby has been in the NICU down here for 100 days and has had multiple surgeries. David and I left, looked at each other, and both said "wow". Aiden isn't in a good place with his health, but at least we haven't had any misplaced anatomy or surgeries. I just hope and pray we aren't in the NICU for 100 days. 

Aiden's Birth: Dad's Story

Corissa woke me up at 3 in the morning with some intense contractions. I panicked and started packing as best as possible.

The whole time we were driving to the hospital I had the feeling that this was it. I stayed hopeful that triage would be able to stop the progression and send us home, giving us another couple of weeks before Aiden would be born.

When we got to triage we went through all the procedures and it became more and more apparent that we weren’t going home. Being told for the last 3 and half months that my child very likely has achondrogenesis was draining. Trying to keep my wife’s spirits high while I was dying inside was not easy. I spent a lot of time crying on my way to and from work. I pleaded with God to take care of Corissa and Aiden, and asked that when we went to the next appointment that the news would be better. But it never was.

When Dr. Richards came in and did an ultra sound to see the position that Aiden was in, he decided to throw his hat in the ring and also placed the diagnosis of doom on my boy. Right after he left to prepare for the C section and left us there with that final tone of negativity. 

We had a good 20-30 minutes to contemplate what news we just received and I lost it. All 3 months of praying and pleading that my son would live felt like they had been wasted. I became so angry at God, at the doctors, and at myself. I felt hopeless. To see Corissa hurting so much and not being able to do anything about it was the worst feeling I had ever felt.

Corissa and I were told that the preparations had been made and we started the walk to the O.R. The feeling of sorrow and sadness that swept my body was unlike anything that I had ever felt. Before we went into the OR, Corissa looked at me and said “I’m not ready for this”. I looked at her and tried to give her a smile as I held her hand firmly.

After she had been prepped for the Csection, I made the final preparations with the NICU and made sure that everything was ready to go. 

 The operation started and the emotions set in. The pleading began. I asked and begged that the pain be mine and not his. That he would be ok and that if he wasn’t that he would not feel anything and that he wouldn’t be scared. 

And suddenly there was a face peeking over the curtain. There was my beautiful boy, and there was the crushing reality that things were not ok. He looked so bad that I told the doctor to hand him off to NICU and not let Corissa see him.

I ran through the halls in a panic with a nurse to get to him in the NICU. When I arrived I saw (from what I remember) 3 respitory therapists, 6 nurses, 2 charge nurses,  2 neonatologists, and  2 pharmacists. Every one quiet and watching the monitors.

The next 5 minutes of my life were the longest that I think I will ever live. My son was purple, swollen, and like he was about to confirm my biggest fear. I approached his bed and said “Aiden, I’m here”. His heart rate then entered the 100’s. Again I said, “Aiden, I’m here”, but nothing else happened. 

Suddenly without thinking, I pulled out Corissa’s cell phone and played a video of Lydia and Melodie playing. Lydia’s voice was the first one on there and she is giggling, followed by Melodie saying something to Lydia. At the sound of Melodie’s voice, Aiden took a breath and let out a weak cry. Melodie then said on the video “She is making me laugh!” and starts to laugh herself along with Lydia. Aiden moved his arms and legs. At this point he has someone giving him air and his color began to return. 

My son is alive and fighting. 

5 minutes into his short life on earth he is being intubated and everyone is confused and surprised, but he is alive! I ran to the window separating Corissa's operating room from the NICU and announced “Babe! He is stable! He is stable!” and I ran back to Aiden. 

Feeling dizzy, the nurse made me take a seat. As I sat I asked myself how this could be and started to thank Heavenly Father for being there and for the amazing crew of doctors there with Aiden. 

He has a hard road ahead of him and there will be lots of bumps to over come, but he is here and fighting and I will be right beside him.

Read mom's story here.

March 22, 2016

The Honeymoon Is Over

If yesterday we took 3 steps backwards, today we took another 10 backwards.

It's never fun to receive a phone call from the NICU during the wee hours of the night.

Aiden's CO2 levels were around 100 and they couldn't get them lowered. This caused him to D-sat again. So they quickly put another artillery PICC line in his arm. This way they can draw blood as needed to check his blood gases.

He isn't doing good. And doesn't look good either. The stress has made some of his swelling come back in his head and around his lungs. His coloring is off, and his lungs are still struggling. We spoke with the charge nurse and was only delivered bad news after bad news on how he's doing. When David asked her to give us something positive, all she could give us is that he's tolerating his feedings really well.

They started him on medicine (nitros oxcide?) to help with his pulmonary hypertension. We are hoping it'll also help open the veins in his lungs and help him to take deeper breaths, absorb more oxygen, and better release his CO2. Some studies suggest this medicine can also help the lungs grow.

They also found his red blood cell count is low due to all the blood they need to constantly take from him. So they will be starting a blood transfusion for him this evening. This will also hopefully help him better move oxygen around in his body as well.

It seems like they need to find his magic set of medicines and numbers to help him the best. We just hope and pray they can get that figured out soon so that he can finally begin to recover and grow.

After playing around with his ventilator numbers and starting the nitros oxcide, he started doing a little better this afternoon. His color started to return and he was a little more relaxed. His breathing wasn't quite as rapid or strained. And he even woke up enough to open his eyes and look at us a little. After such a rough few days and an awful morning that truly seemed like we were losing him, seeing him open his eyes and looking at us helped us feel a little better. I like to take it as a sign he's telling us he's hanging on and trying.

Now here's to hoping and praying his blood transfusion goes well and that helps him out.

Positives of the day:

- The girls are really loving staying at the Ronald McDonald house. It's like one big playground to them and I think that's helping them cope with this really tough situation.

- He opened his eyes and interacted with us!

- Since he loves his sister's voices so much, the hospital is going to give us a teddy bear that we can record their voices on and then be by him all the time. The nurse can play it whenever for him.

- He put out some really big diapers this afternoon, which means his body is still working through his extra fluid.

March 21, 2016

A Really Rough Day

Perhaps one of the most frustrating experiences in the NICU is as you take one step forward, you always take three steps back.

We got an early morning call from his nurse informing us his intubator became blocked from secretions. So they had to pull it out and put it back in. They said he handled the process well, but it increased all his stats significantly after wards.

He was obviously exhausted and irritated with nurses and doctors checking on him. David and I spent the entire day in total frustration. We would sing and talk to him, and repeatedly played videos of the girls playing for him. This would help lower his heart rate,  breathing, oxygen, and CO2 levels. But without fail, each time we finally got him to relax, someone would show up and suck secretions out of his lungs, or do an ultrasound on his heart, or move him around and stress him out again.

We did come up with a plan with his nurse to increase his oxygen levels before anyone comes along to bug him. It seems to help him not D-sat quite as badly and takes him less time to recover from the stress.

The geneticist came by today. I do have to say he was one of the best geneticists we have interacted with so far. Most of them give off a very pompous attitude and have zero beside manners. This guy was very nice, personable, and had a thick Italian accent. He is inconclusive about what type of skeletal dysplasia he has (no surprise) and wants him to have xrays done in a few days. He hopes to pinpoint what he has before the tests at ARUP come back, but I honestly doubt we will be able to.

The ultrasound from his heart confirms he has pulmonary hypertension. We aren't surprised to hear that either, but even then it's very discouraging and feels like yet another issue that's working against him. They are going to increase his oxygen levels to see if that helps him. If not, then they are going to start him on some medicine for it.

They are also wanting to put his artillery PICC line back in his arm. If they do this, they can keep track of his blood gases and compare that to his CO2 levels on the monitor. David and I would prefer they do that then keep poking him for blood. But I also hope this one won't clot over as quickly so they don't have to keep taking it out and putting it back in. That can't be a fun thing for Aiden to experience. 

Today was such a rough day. David and I are feeling very hopeless. David gave him another blessing. But it's still so hard to hold on to faith when you are sitting next to you struggling son and delivered more bad news. I just hope and pray he has a nice quiet night so he can rest and recover from such a horrible day.

Positives for the day:
- He loves his sisters! He calms down to their voices more then David and I. The nurse was amazed at how much he relaxed as soon as we played some videos of them giggling together. We joked that we needed to constantly have that playing in the background for him.

- The swelling around his head and especially his body is still looking better. And he's still consistently putting out large pee diapers which means his body is working hard to push the fluid out. 

- We were able to have a really nice evening playing and giggling with the girls. David and I needed that a lot today, even if it leaves a big sting that Aiden isn't with us.

March 16, 2016

Aiden's Birth: Mom's Story

I woke up that Monday feeling awful. My rib pain was through the roof, and my tummy was big enough that I couldn't breath easily. Being on bed rest since January had definitely taken it's toll on me and I was feeling defeated and frustrated.

I started having Braxton Hick contractions 3 minutes apart again. This got me feeling even more frustrated. I had been dealing with preterm labor my entire pregnancy, and those contractions starting again made me begin to cry.

I tried all day to get those Braxton Hicks to go away, but nothing I did worked like before. I went to bed thinking that sleep would help calm them, but I woke up in the middle of the night and they were still going. Only now they felt stronger, and were starting to hurt. Constant Braxton Hicks had made my tummy sore and tired before, but this time the intensity was only beginning to climb. I felt panicky thinking labor might be happening. Around 3 am they were really starting to hurt, so I woke up David and told him I thought I was actually in labor. And that terrified me.

Thankfully my sister was staying at our house to help out while I was on bed rest. We woke her up and told her we were going to the hospital.

When the nurses confirmed I was in labor, I broke down and began to sob. The reality that Aiden might not survive more than a few hours sunk even deeper in my heart. I was terrified. I didn't want to go through with it. I wasn't ready to give birth. I laid there and tried to will my body to stop laboring, and I prayed the nurses would tell me "just kidding!" and we could go back home. But the doctor came in, trailing an ultrasound behind him, and talking to his two interns about prepping for my c-section. The doctor quickly checked out Aiden on the ultrasound, and announced that he didn't think this was going to turn out well and left the room. After that they began taking us away to the surgery room.

That walk down the hallway seemed to last forever. David and I walked hand-in-hand crying. The nurses cried with us. I remember turning to David right before we entered the room and told him I wasn't ready and couldn't do this.

When they finally took Aiden out of my tummy, they promptly grabbed David to take him back to the NICU doctors on the other side of the wall. And I started to panic. I repeatedly called after him, "but I didn't get to see him". But everyone around me was silent.

I stared at the window between my surgery room and his NICU room feeling completely helpless. I could see silhouettes of people moving around, but no sign of David or my son. I began crying again and pleaded with Heavenly Father as I laid on the surgery table. I felt like I was there for an eternity, staring at the clouded window that separated me from Aiden. Someone was wiping my tears from my face. I had a strong instinct I've never experienced before that screamed I needed to go find and protect my son.

Finally the window opened, and David peeked through. I almost didn't believe him when he said, "He's stable! They had to intubate him, but he's stable!" I broke down again, but this time they were very different tears. One of the nurses came by my side, held my hand, and cried with me.

I had a hard time in recovery. My blood pressure kept dropping and I felt like I was in and out of consciousness. The world kept collapsing in on me and right when I was about to be gone, I'd snap right back. I knew it was because I was exhausted and just had so many emotions run through me at once while enduring the adrenaline from the c- section. The nurse had to put me on oxygen for quite awhile. 

When I was finally stable enough to move out of recovery, they made a pit stop at the NICU for me. They wheeled my bed right up to him, but all I could see and touch were his tiny little feet.

It wasn't until I was able to get out of bed and into a wheel chair the next day that I was able to really see him for the first time. And I was instantly in love, but very worried for him as well. His poor tiny little body looked so swollen from the hydrops. His head and face seemed to have the worst of it. But he was beautiful, alive, and all mine.

Clive Aiden Osuna born 3/15/16 at 9:31 am. 4lbs 2 ozs,  13 inches long

Read dad's story here.