April 29, 2016

Bittersweet Moments

It's with a very heavy heart that I write these words. It's almost as if putting them onto my phone is making them real when a part of me has wanted to keep these realities from myself.

This last part of the week has been so emotionally rough for David and I. Holding the life of your child in your hands is exhausting. We've had to have some very tough discussions and make even tougher decisions and guidelines for our family and the future.

In our care conference we went over all of Aiden's history, his progress, etc. Before the doctors came out and said it themselves, it became clear to us that so far it medically isn't working. I know his stats, numbers, and history. I am mature and logically minded enough to recognize this. On paper it's not working out.

There is a good reason why he's considered a "critically ill child" and "fragile". He has had to be heavily sedated his entire life. So much that the doctors explained that he has often been a single step away from what's considered general anesthesia. The reason for this is because he has no lung reserve due to their small size, so the smallest upset sets him back for days.

His body is growing, but his lungs don't appear to be. We very clearly know this because of his sedation needs and inability to handle even a small upset without turning completely purple. We also know this because if they were growing, he wouldn't have had to be switched to a ventilator that gives him even more support. If his lungs and body were growing together, this wouldn't have happened. But because his body is growing and his lungs aren't, the other ventilator was failing and he had to be put on this one to maintain him.

It's so discouraging that his lungs are the only real issue. Everything else is perfect on him. We all realize that his body grows slower than normal babies, and that he will only have a 3.5 foot tall person to maintain. But his chest size is so small, we still have a big "will they grow to sustain him?" question mark hanging above his head.

So David and I have had to discuss just how long we want to keep going and trying with him. Would it be easier on everyone to let him go when he's younger? Do we let him stay in a hospital his first year of life only to have to let him go then? Where do we draw the line?

And then we had the crushing realization that we have to think about the girls too. Melodie has testing for kindergarten in May. She is such a sensitive, mature, little spirit. I know she especially will have a hard time if he passes, and I don't want that to hinder her start in school.

It was an awful conversation to have. But we decided, and told the doctors, that even if he requires more support and medicine, we are going to do everything needed until the end of May to keep him going. That way Melodie can test for kindergarten, and if anything happens, will have the entire summer to grieve before school starts. Then in June we can reassess his situation and make a decision whether to keep going or let him go.

Having that conversation with the doctors was worse then the one we had with the neonatologist before his birth. Just writing about it now has me feeling sick to my stomach and teary eyed.

Before the care conference Aiden was fitted for his neck brace. This is a very exciting thing, we could hold him! But I'll admit holding him directly after the care conference made that moment very bittersweet. It calmed me, but also made my fears of losing him sit on the surface of my mind. Almost as if a part of me didn't want that moment holding him because it would make losing him that much harder.

I love this little boy with everything I am. I've found myself tearfully begging Heavenly Father to let him live like I so often did while pregnant. I haven't slept in a few days. I've had consistent nightmares of his funeral, wake up to pray and beg until I fall asleep, only to have the same nightmare again. If I were to lose him I don't know if I could bare it.

As I pray I feel only the same thing, that he's going to be okay. But "being okay" doesn't offer me the comfort and peace of mind I need. I just want to know how will he be ok, alive or not?

David and I decided that we are going to try and relish every moment we have with him. As hard as it will be, we are only going to look at a day at a time and try not to let ourselves think about the future.

So today, he had a great day. He was very stable and weaned off the ventilator. He got super upset when he pooped and purple cried, but he calmed himself down without needing extra help. I finally got him to take and suck on a pacifier for the first time in his life. And he woke up, wiggled his little body around, looked at me and moved his eyebrows as I talked to him, and gave me his first genuine smile as I munched on his cheeks.

April 27, 2016

So Much Information, So Little Time

Over the past few days a lot has happened. A LOT. We've had many different professionals coming by to see him, and we've had a ton of new information come our way. It's been a little overwhelming. In an attempt to get everything written down for my own sake of remembering and retaining all this information, I've had to outline each day's events. My overtired brain can't lay this out in any other way.

Monday - We were able to wean him quite a bit on this different ventilator. And we continuously got huge amounts of secretions out of him. His nurse, RT, and nurse practitioner seemed to be very happy he was doing so well also. Everyone was so impressed at how fast he was weaning down on the numbers and kept expressing to us that this different ventilator seemed to be really opening him up and doing wonders for him.

David and I were feeling very hopeful again. It appeared he was finally making some progress and doing what his doctor was wanting him to accomplish. It seemed like the horrible weekend was finally put past us, until the night neonatologist came to see him and said to David, "Oh. Looks like he's on even more support now. That's concerning."

David and I immediately plummeted emotionally again and felt awful. We were so confused, everyone else was so positive and excited that he was doing this well. So why did this other doctor get so concerned when she saw him on this machine?

During shift change when both our night and day nurse was rounding with each other, we told them how we felt and asked them to give it to us straight and just be honest. Are we being delusional? Is everyone just tiptoeing around us? Why would everyone be so excited and positive when his next doctor was very clearly concerned to see him on this ventilator?

They told us that while this ventilator is technically more support because it offers higher pressures for his lungs, it's also rougher on the lungs and a lot of kids can't handle that. They both assured us that they've seen a lot of kids that struggled on the other jet ventilator, but then took off and weaned quickly on this new VDR one instead. All kids are different, and it's not unusual to see this happen. They apologized on behalf of the doctor, and our night nurse specifically told us that she sees plenty of hope for him, and if it ever gets to the point that medically it's not going to work, she would be honest and tell us. She then turned to me and made me promise that I wouldn't let these doctors get in my head when they have no hope. She said I need to make them keep going until he dies on the table - but not to worry that much because he's heading in a good direction.

The inconsistency of all the people's opinions around me is exhausting. It's such a mind game to have so many people walk in and out with different ideas about him. The nurses told us doctors can be so black and white, but medicine has a lot of gray areas they don't like to talk about.

I'll admit I still didn't sleep that night and obsessively thought about it.

Tuesday - Aiden had a very stable, quiet day. We continued to suction some huge boogers out of his lungs and he weaned to less pressures very well.

Nothing much happened until that evening. They had an ENT come examine him to see if he can have a trach placed with his small neck. That made him pretty upset, and rightfully so. The ENT was pushing around quite a bit to feel his throat. I was holding my breath, almost expecting the worst and have him tell us a trach wouldn't be possible. But thankfully he told us we can custom make him a trach without a problem. The only hurtle to this is that they would like him to be a little bigger so that the actual surgery would be less invasive. He will also need to weigh 12 pounds before he will have the lung capacity to go home with the trach and maintain breathing with the home machine by himself.

This kid is already a fourth of the size he will be in his adult life, so all this talk of him needing to be bigger makes me think he will be at the hospital even longer. He's not going to grow as fast as other children. I'm trying not to be discouraged by this, but having his first birthday in the hospital is starting to be an even bigger reality in my mind. That scares me. Instead of hoping he'll come home before Melodie starts kindergarten, I'm now hoping he'll be home for Christmas. (And not to mention before our insurance kicks in again for the year and we have to meet our out of pocket a second time.)

The ENT also thinks Aiden has a small cleft pallet in the very back of his mouth. He can't technically confirm that yet because he is intubated, but it did feel like there is one as he examined him for the trach. He told us surgery for that would happen between 6 months to 1 year of age. And quite frankly, that's the least of my worries right now. A small cleft pallet is nothing compared to the grand scope of things and is very normal for the collagen gene mutation he has. But it does add to the surgeries he will be receiving.

In an attempt to get his neck and spine issues figured out, we tried to do a series of xrays at his bedside. They shot the xrays at odd angles in an attempt to get a look at the bones they need to examine. We all thought we got some good pictures, but they came back and said they still weren't good enough. So his doctor decided to look into getting him a CT Scan instead.

Wednesday - First thing in the morning, we had an incompetent respiratory therapist come in, accidentally disconnect Aiden's ventilator, and didn't know how to reconnect it again. Aiden's stats obviously dropped significantly, and the nurse had to bag him as another RT came and put the ventilator back together. We were beyond furious. The nurse and nurse practitioner was livid. The RT supervisor and other attending RT'S were pissed and booted him off our kid. And you better believe he will never come close to my boy again. If you are so bad at your job that you are going to disconnect his life support, almost kill my baby, and then dilly dally around as you try to figure out how to put it back together, you obviously don't know what you're doing and don't have a right to be anywhere near my child.

I felt so frustrated and defeated after that stupid mistake. We were making so much progress. Mistakes like that shouldn't be made, especially if you are the person in charge of the machine that's keeping a child alive. His little reserve dropped again and we had to give him extra medicine so he could stay asleep and recover from that.

It turned out after a lot of back and forth between his doctor and radiology, we decided against walking down to get a CT Scan of his neck and spine. CT Scans are really good at looking at fully hardened bones. But his bones aren't yet completely oscified. So realistically they wouldn't show much more than the xrays. Plus, we would have to walk him downstairs with a whole team of people, switch him to a different ventilator temporarily, and hope he could handle it while the scan happened. There was also a risk he could get extubated as the scan happened - which is super scary to think about all those tubes being pulled out of him in the middle of a CT Scan. So his doctor decided the cons outweighed the pros and it wasn't worth it. I agreed with her, I don't want to risk something happening to him when there isn't a guarantee results would come from it. So we are back to waiting until he's on a conventional ventilator to get an MRI.

Wednesday afternoon a neurosurgeon came by to check Aiden's reflexes and make sure he doesn't have any paralysis. Aiden cleared all of his reflexes with flying colors. Then we discussed his future possibility of needing back surgery. Because of this gene mutation, a lot of his bones are still soft, or not fully oscified as I've been saying a lot. There are parts of his spine specifically that are not. If you were to look at one vertebra at a bird's eye view, it looks like a circle with spikes coming out around it. The spikes are oscified, but the middle round part is not. He may need to have surgery to help stabilize his back and neck in the future, but that wouldn't happen until he is around 2 years old - and may never need to happen. He could very well oscify those bones by himself. We are going to keep him on vitamin D supplements to help the process along as well.

In the meantime we still have the issues of neck stability for him. No one is allowed to hold him right now because of that. But realistically, he can't lay in a bed until he's 2 or that spine finishes hardening. So later this week he's going to have a consult for a custom neck brace to be made for him. Once that's made, we can pick him up and hold him all we want.

Having a neck brace for him actually makes me feel a lot better. Genetics actually expressed to us a while ago that babies with this type of dwarfism commonly need a neck brace. Since their heads are normally sized in comparison to their much smaller trunks, it makes sense. Babies have a hard time holding up their own heads as it is. And then perhaps we can take away this stigma that's been placed on him where everyone is paranoid about even touching him.

All of the momentum we've had this week has me feeling a little more positive. I keep telling myself all these consults and details wouldn't be happening if the medical team didn't see progress. But because "progress" is different to every doctor here, I still feel very hesitant to allow myself to have these hopeful thoughts.

Our amazing neonatologist leaves at the end of this week. But she's set up a care conference with the next upcoming attending neonatologist to make sure there won't be any confusion as to everything that has been happening. I'm so glad she took the initiative to do that and I hope it helps with the transition to yet another doctor.

April 25, 2016

Many Miracles

This weekend has been incredibly scary. David and I have been at the hospital all day and night except for just a few hours of sleep. I'm in awe at the miracles we have continually received these past few days. Each nurse, nurse practitioner, respiratory therapist and doctor that has had him over the weekend was divinely placed to be in his care. I truly believe that. They have been able to come up with ideas and solutions to help him and have acted quickly. They saved him and I'm so grateful for each of them.

We aren't out of the water yet. We are still trying to get things figured out and even have a consult with a pulmonologist today to see if they have any other ideas for him. I've been continually praying that they will be inspired as well.

We found after a chest xray that his lungs were completely collapsed, which is the reason why his heart was failing and his CO2 levels so high. He was completely surrounded by fluid and that wasn't allowing his lungs to expand. We think the fluid in his body from the increased meds and increased foods was  building up. His pulmonary hypertension causes fluid build up naturally as well. But he's been growing and peeing, so we all thought his body was getting rid of it fine. There is no growth chart for his dysplasia to base these things off of, so his medical teams have been guessing at what is healthy and isn't. But we now realize he wasn't growing, he was retaining fluid, and the fluid in his body was building up until his lungs collapsed and everything else began to fail.

They have been giving him multiple doses of the diuretic all weekend. He has had multiple diapers that were between 80-103 grams! And quite literally after his first big diaper, his CO2 levels began to plummet downward. This showed us the fluid around and in his lungs was starting to go away, and his lungs were starting to open up again and push that CO2 out.

After more xrays, it appears the top lobes of both his lungs are still collapsed. Having all that fluid in there causes your lungs to build up a lot of secretions. We tried suctioning them out multiple times, but we couldn't get them to loosen up. So the respiratory therapist tried vibrating his lungs to loosen it up. That didn't work either.

This morning they moved him to a different type of ventilator to try and get all that gunk out. It's very similar to the one he was on before, it still gives him 300 small breaths per minute. But it vibrates his lungs a little differently and is known to break up backed up secretions nicely. They tell us it's not a step back or a step forward, it's a side step to help him keep progressing.

So far we've been able to suction quite a few big boogers out of his lungs. They will do an xray tonight and see if it opened him up. And hopefully we can keep getting all those secretions out.

Right now we are sitting at his bedside, and I'm feeling nervous about talking to the pulmonologist. I'm so scared we will only hear more doom and gloom from them. His doctor gently told us she sees his progress, but he clearly has chronic lung disease on top of under developed lungs and with him being over a month old, she would like to see him further along then this. I can see where she is coming from realistically. It's been a reminder that we have a long way to go and the future is still unsure.

My biggest hope and prayer right now is that this temporary ventilator will get us back on the right path and open him up so we can make some good progress. And we now know that he needs to be on a diuretic long term.

Sunday evening he finally woke up. He was nice and calm, and interacted with us for a good 2 hours. He even smiled at us a few times and behaved like a normal baby. I'm so grateful I got to spend that time with him. It calmed a lot of my fears and worries after we were so close to losing him multiple times.

Keep praying we can get this figured out and his lungs will grow quickly and he won't continue to retain fluids.

April 22, 2016

Don't Know Where We Are Going

Things have gotten really bad, really fast, and I can honestly say I'm not sure what will happen this weekend.

Aiden has been completely unstable, and seemingly out of no where. For the past couple of days he has seemed to be deteriorating and we are all grasping at straws as to what could be happening.

On Wednesday evening he had a huge break down. He purple cried for a good 20 minutes. This type of crying causes his body to clamp down on his ventilator tubes, which in turn makes him unable to take a breath, which makes him panic more... It's a huge snowball. The nurses couldn't get him to calm down. His heart rate was shooting into the 220's and they were having to give him manual breaths, so they had no choice but to give him a quick dose of heavy duty sedation and knock him out.

We thought it could be a sedation and stress issue, and tried adjusting his meds accordingly. He did ok that night, got him back to where he was before. Come Thursday around noon, he had another episode. But this one was much worse. His heart rate dropped really low, his CO2 went dangerously high into the 100s, and although his oxygen was at 100%, he was only satting at 75%. They once again had no choice but to knock him out.

We were able to get him stable later that afternoon, although they also had to go up on his ventilator settings to keep him under control.

Thursday evening at shift change, he was starting to follow the same pattern and begin to break down. I was able to sing to him and keep him calm, but he still had another brady desat episode when the respiratory therapist only touched him.

Today has been awful and scary.

He had a period of time that he repeatedly had brady spells, one after another for a good few minutes. His heart rate went as low as 47 at one point, and we had people standing by in case they needed to resuscitate. During this time his CO2 levels skyrocketed into the 100's again.

Something was going terribly wrong and he was deteriorating fast. We had to up his ventilator pressure by another 7 to force open his lungs and push the CO2 out of his body before his blood turned acidic.

We got a chest xray to find his lungs were completely collapsed and looking like they were surrounded by fluid again. The doctors grew very concerned his heart was failing and ordered an echocardiogram.

Waiting for that echo to come back was horrible. We gave him a diuretic in the meantime to put his kidneys into overdrive and push out all that fluid. Between upping the pressure on his ventilator and getting his body to release some of that fluid, we were able to stabilize him a little bit and slowly get his CO2 levels to come back down.

Thankfully the echo came back to show he doesn't have heart failure. But that didn't leave us any better off. This realistically means his lungs are failing him.

Right now the plan is to continue addressing the extra fluid. We will give him another dose of the diuretic and give him less food to help alleviate that. And we are going to keep him extra sedated to help him not get agitated and stay comfortable. We've all agreed with his medical team that we are going to give him the weekend and reasses his situation on Monday.

David and I have been at an emotional crossroad. We have given him blessings and we have received blessings during these past few days that state the very opposite of what's happening. Seeing him tempt death so many times the past few days has forced us to wonder, are these blessings our own wishes for him? Do we need to be realistic and consider letting him go? Is this his way of trying to tell us that he's done and wants to go back home? Do we keep on insisting we drag him along although he's clearly suffering?

We are trying so hard to hold on to that last string of faith, but it's also so hard to do that when his body repeatedly starts to shut down. I still have hope, but also feel so completely lost. I've been begging Heavenly Father to give me some sort of answer about whether we should keep pushing him, or if his time on earth is coming to a close and we shouldn't let him suffer anymore, but I haven't gotten one.

These past few days have completely shaken everything we've gone through with him so far. And if his body can indeed bounce back from this, we will be starting over with his progress.

I guess at this point we will have to see what the weekend brings and what his tired little body can handle.

April 18, 2016

Exhaustion and Anxieties

Exhausted doesn't even begin to describe how I'm feeling. At this point I left exhaustion weeks ago and have entered a half awake, half zombie trance. At the end of the day I look back and often wonder how I got from one point to another. I fall asleep as soon as my head hits the pillow and don't remember waking up throughout the night to pump. And when I do wake up in the morning, I feel like I didn't sleep at all.

The girl's colds decided we didn't have enough going on and had to turn into hand foot mouth. The symptoms popped up after we had gotten them back from my parents.

We decided to go home for the weekend so everyone could sleep in their own beds and we could get a few things done around the house. Our plan was to use this as a test run for coming back home permanently. We were going to spend half the day at home, and then spend the afternoon at the hospital. Since we are anticipating months for Aiden's hospital stay, realistically this will eventually have to happen.

But the girls woke up covered in red bumps and were miserable. We spent the entire morning sitting at instacare. While we sat and waited for hours,  the realization we were now in contact with hand foot mouth and couldn't go see Aiden set in.

And he was struggling as well. We haven't been able to get him to come back up after his withdrawals from Precedex. They've had to increase all of his ventilator settings to the point of needing the most support since his birth. He's been having frequent desats and brady episodes and purple crying to the point of them needing to give him manual breaths.

They tried testing him again for an infection. They took blood cultures and respiratory cultures and started him on antibiotics just case. They found his red blood cell count was low again from taking so much blood for tests and gave him his 4th blood transfusion. They took xrays all in an attempt to figure out what was going on with him and why he's plummeted so far.

And all the while this was happening, I was over an hour away from him and taking care of some very sick and miserable girls. It's torture being torn in two like this. There's no other way to describe it.

We called his nurse every few hours day and night to get an update. I felt helpless and on the verge of an anxiety attack the entire weekend.

Thank heavens one of his primary nurses that knows him really well had him today. She noticed the ventilator tube going down his throat was slightly out of place and twisted in his throat. Since he's been awake more and moving around, this isn't an out of the ordinary occurrence. As soon as she noticed this she repositioned his tube and he immediately calmed down and became stable.

We were able to see him for just an hour and a half this afternoon, and he is completely exhausted. Any reserve he had was taken up this weekend, and I have a feeling it's going to take him awhile to come back up again. It's like we've gone 10 steps back once more and makes his hospital stay seem that much longer.

This weekend has also brought up a whole new set of anxieties and worries for me. The girls loved going home and being around all of their things. A part of me found comfort in being there as well. But a bigger part of me doesn't know how we are going to do this long term. We need to get the girls back home so they can have something normal. But realistically that would mean I'd only get to see Aiden for around 2 hours (or less) a day as well. By the time I could get the girls to a babysitter and out to the hospital in the afternoon, I'd almost have to turn around and come back. And when Melodie starts kindergarten - what then? That presents a whole different situation that makes me sick to my stomach just thinking about it.

I'm so exhausted I can't rationally come to a conclusion and make a plan that would work for all of us. I'm at a total loss and don't know how we are going to get through this.

Here's to hoping I get some decent sleep so my brain can function and figure all of this out.

(Blood transfusions make him roasty-toasty pink, nice and plump, and super yummy to munch on!)

April 14, 2016

Becoming A Breast Milk Donor

I've always been very blessed with a high breast milk production. I realize how lucky I am, believe me I do. I'm not trying to brag or slight those mothers that struggle with this. I can only imagine how frustrating and disheartening it is to struggle with that.

While I was pregnant and expecting Aiden to not survive, I made the decision that I would pump and donate breast milk in his name. Fast forward to our very happy outcome, and that obviously hasn't happened.

But my body over produces like it's going out of style. My freezer at the NICU is full, my freezer space at the Ronald McDonald house is full, our freezer back home is filling up, and I even have several bags sitting in my mother-in-law's freezer. I feel like I'm up to my eye balls in mommy's milk.

I recently overheard a mom in our NICU pod expressing to her nurse how discouraged she was with pumping. Her supply was dwindling and she has tried everything. I could hear the heartache in her voice as she said she felt it was so important to give her little guy breast milk but didn't know what else she could do.

I wanted so badly to pull her aside and give her the few bags I had pumped and sitting in my purse that day.

The nurse started to talk to her about getting donated breast milk, and she seemed so happy and relieved to have that option.

This made me realize I can still donate breast milk in Aiden's name. Only rather then doing it in his memory, it will be in celebration of his life! So I'm now officially in the process of donating breast milk. It's quite a process as well! I've had to fill out an extensive application, have a phone interview, and now I'm waiting to go in so that they can do blood work on me.

I hope my very fortunate situation can help a mother in need. And I know it'll be very theraputic for me as well in this situation.

April 13, 2016

Care Conferences and Tears

This past week has been a whirlwind of crazy!

The girls suddenly came down with a virus that gave them fevers and a nasty cough. David and I can't afford to get sick ourselves, and we don't want to bring any sickness to Aiden either. We had no choice but to quarantine the girls to my parent's home. This brought many tears and feelings of guilt to me as it exemplified me having to be split in two right now. There isn't much worse than sending your sick children away as they are wanting mommy. We've missed them terribly as we've been separated.

Thankfully David and I haven't gotten sick ourselves. We've been loading up on vitamin c just in case, but seems we got the girls to grandma's house in time. And on top of the girls being sick, Aiden has been having a rough few days as well.

The PICC line he's had in his foot has only needed to be used for his continuous sedation of Precedex. He's been well enough they haven't had to use that line for anything else. So for the sake of risking an infection happening from it sitting in his leg, they began to wean him off the Precedex slowly over a few days. Once he was weaned they were able to pull the PICC line out.

This also allows them to have the opportunity to try and lessen his sedation needs. We don't want him laying in bed completely knocked out for months on end.

He seemed to be doing alright at first. But the day after he was weaned completely off the continuous drip, his heart rate shot into the 200's, his CO2 levels climbed as high as 120 at times (he should be in the 50-60s), and he was fighting the ventilator. They did chest xrays only to find his lungs look great. So they took a blood culture to see if he got an infection when they pulled out the PICC line; but that came back negative as well. The only plausible solution to this sudden set back is that he's having withdrawals from the Precedex.

It's a double edged sword, we are all relieved his lungs are fine, but we don't want him having withdrawals either.

In order to get a quick access point to give him meds to calm down, they decided to put in an IV. My poor baby. We were there while the nurse tried a few times but couldn't get one. So she called the IV team and urged us to go home since it was late. She promised to call us once the IV was in place.

While we sat and waited I lost it. My girls are sick and I shushed them away, my sweet boy was feeling yucky and there wasn't anything I could do... I felt so hopeless, like my babies needed me and I couldn't do anything about it. My emotions have continuously been sitting on the surface since his birth, and these events tipped the iceberg and released them all.

It felt like forever, but finally around midnight they got an IV in him. It took them 8 times to finally thread it into a vein. But they were able to give him some extra doses of morphine and that calmed him down.

We had a long discussion with the doctor about what we could do for him the next day. She agrees we need to make sure he's comfortable, but also stressed that for his own health he can't be on a continuous stream of sedation either. That will have it's own negative side affects. So she worked with the pharmacist and came up with a different medicine routine. If this doesn't work, she told us she would call in a pain management team and see what else they could possibly do. I hope this new set of routine medicine will help him.

Amidst all this, we had our care conference. We made sure our social worker, neonatologist, occupational therapist, charge nurse, parent advocate from Rainbow Kids, and geneticist were there. It was a little intimidating to walk into that room with all those accomplished individuals. I'm so thankful I have a husband that's able to be confident and articulate our wishes and desires to such a group of people. I tend to freeze up and have a hard time getting my point across.

It did go really well, we were able to tell them the things we need to see happening with him. The doctor explained to us that in her professional estimate he would be here for at least 6 months and that he would most likely go home with a trach and g-tube, so we need to keep that in our minds. The doctor even turned to the geneticist at one point and asked him if he had any other information or growth charts they could give her for his dysplasia. Apparently they have been using medical charts for other dysplasias and estimating what he will need and do off of that. The geneticist told her sorry, but no, they don't have anything like that. So our poor kid is so rare that everyone is just guessing if he's following where he should be.

The entire care conference as we talked and discussed our needs and goals for Aiden, I had a nagging feeling I needed to express specifically to his neonatologist just how special he is to our family. So I told them about how I went into the c-section sobbing, that our mom's called funeral homes for him while I was in OR, and how everyone expected a funeral. I tried to tearfully express to her that he's here, he's beaten every odd placed against him, and my biggest hope is that everyone in here can realize just how special he is and have that same level of hope and positivity for his future. I cried, and I managed to make everyone in the room cry.

In my experience, individuals working in the NICU and especially the neonatologist can sometimes get so wrapped up in the numbers they forget the baby attached to them. All NICU babies are miracles to their families. Aiden is especially meaningful to us. I hope it helped his doctor realize he's much more than a bunch of numbers and that he's truly a special little person with individual needs. Perhaps it'll help her while she makes decisions for him.

We also talked to the manager of nurses about our need to have consistency for Aiden. We told her a little bit about his story and made her cry also. We then outlined his ups and downs since he has been here, and showed her how we linked it back to inconsistent care. Thankfully she got it, and she agreed that he especially needs consistency since he has such a different need due to his rare dysplasia. We came up with a plan to try and nail down a good team for him. And in case of the off chance we do get a new nurse once in awhile, we are going to create an "About Me" poster that outlines things we've observed that he likes and ques that something medically needs to happen.

David and I feel better. We are confident all our nosiness and poking around (and making people cry) will help Aiden continue to thrive and improve. Speaking up and advocating for your child goes a long way. Our nurse even expressed to us that they wish more parents would do this, that they truly recognize that parents have that intuition for their children and can pick up on things they may not see. Again, I'm so thankful we experienced this before Aiden came along.

April 08, 2016

Helping Aiden Continue To Thrive

I've been feeling a little discontent lately. Call it mommy intuition. I feel like Aiden's entire life so far has been scary, sometimes painful things, then getting knocked out. Then waking up to confusing scary things, then getting knocked out again. And due to him being intubated, he hasn't received the same amount of calming touch that other infants get. Any handling he has had has been mainly negative. I think this is ultimately why he tenses up and goes into a pitfall whenever something is done for him. I don't want him to further associate touch with negativity.

I'm also growing concerned with him laying there with barely any movement due to sedation. I know from being on bedrest with him for 6 weeks just how uncomfortable laying in bed can be. Although the nurses change his position every few hours, your body gets stiff and starts to ache.

I can't shake the feeling that he needs something else, something more positive. He responds so well when I sit and hold his hand, but as much as I wish I could, I can't be there offering that small amount of support and comfort all day.

I've been praying and thinking of what else I could do to help him. As the past few days have gone by, a few ideas have come to my mind.

I asked the nurse for a couple of burp cloths. My plan is to sleep with one against me, then bring it to the hospital the next day and use that as the cloth they keep over his head. I'll switch it out each day in hopes that this will keep my smell close to him when I'm not there. They say it's really hard to smell while intubated, but I believe his little spirit still realizes there is a piece of mommy there. And once he's no longer intubated we'll already have this established.

I hung the dragon toy the girls picked out for him above his bed. My hope is that when he wakes up and no one is immediately around, that will give him something familiar to look at.

I asked to speak to an occupational therapist, who looked over his joints and muscle tone to make sure he wasn't starting to stiffen up or lose muscle. So far he looks good, but she will come check on him twice a week now and give him some baby massage. She also taught me some simple techniques that can help him with stiff joints and pain tolerance so that I can massage him too. Our goal is to also start teaching him that touch isn't only a negative experience.

He seemed to really enjoy the massage today. At first he seemed unsure. He even opened his eyes, looked at me, the therapist, then back at me with this furrowed brow. (It was quite hilarious!) But after only a few minutes he relaxed and let the therapist rub him.

We did agree to music therapy early on, but they have only come by to play for him once. So in our upcoming care plan meeting I'm going to see if it's possible to have them come on a more regular basis.

The amount of care you get to give your baby in the NICU is so limited. As a mom it's devastating to not be able to care for your child the way you would like to. I would give anything to pick him up and comfort him when he gets upset and silently cries. When a nurse asks if I would like to change his diaper I feel overcome with joy that I get to do something so simple for him. I truly believe he feels that lack of connection as well. My biggest hopes and prayers are that these things will help him continue to thrive until I'm able to keep him next to me all day and night long.

April 06, 2016

Advocating For Your NICU Baby

When our second child was in the NICU, we were scared and timid from the stress we were feeling. We felt clueless as to what was going on in the beginning and understood very little as to the medical decisions they made for her. We weren't timid on purpose, we certainly weren't shy about asking questions. But the fear and anxiety that also comes with having a sick baby caused us to cower by her bedside.

The staff was great at updating us on her situation and the changes made to her care plan. But my husband and I don't have a medical background, and we nodded our head as we struggled to follow along with all the medical terminology.

It wasn't until she had been in the NICU for quite some time before we began to feel frustrated. She wasn't improving, and every day it felt like someone came in with new ideas. There didn't appear to be any consistency, and we barely understood what they were doing to her and giving her. As her parent, that was upsetting and the frustration, confusion, and anxiety only grew.

We had become close with a particular nurse that signed up to be on her primary care team. I can't remember how the conversation lead to this, but David ended up opening up to her about feeling frustrated and lost. She got real serious with him and asked why we didn't say something before. She reminded us that we are our baby's biggest advocates and we should speak up and constantly be asking questions or else they will assume we are fine.

After that we asked them to explain every stat number, piece of equipment, medicine, treatment plan, and anything else that came to mind. We put our foot down with certain things and played an active roll in ensuring her care plan was consistent. We let them advise the medical part, and we told them how we wanted it done. And they listened to us.

Our nurse was right. We learned a big, hard lesson with our Lydia. You absolutely are your child's biggest advocate, even while in the presence of individuals that know more than you. They may be doctors, but you are your child's parent and you have intuition for a reason. Never let the fear and stress of having a baby in the NICU cause you to cower by the bedside. You won't realize that's what you are doing until you are overwhelmed with confusion and frustration. Ask questions. Find out what every little stat and medical term means. If you can't remember, ask again. And don't ever be afraid to step in and be an active part in their care process.

Fast forward to Aiden being in the NICU, and we have been very nosy from the beginning. We've made sure we understand everything that is going on with him in as much detail as we can. We've asked them to draw or look up pictures to explain things further on occasion. We can call in and confidently ask his nurse what the PIP and Peep are at on both his ventilator and jet system and understand what the numbers mean. We have learned so much and feel confident we know what's going on.

Which finally leads me into his update...

We have requested that the same set of nurses consistently have him. We understand it can't always happen, but we quickly noticed that he does his best when he's with someone that knows him and is used to his ques and temper. We've had a consistent set of nurses up until a few days ago. And just as we knew would happen, he's gone down again. Only this time David and I aren't convinced it's his body's fault.

Every nurse, doctor and respiratory therapist have been great. But every nurse, doctor, and respiratory therapist also have their own ideas and ways of doing things. And having a different nurse, doctor, and respiratory therapist with different ideas every day for a few days makes for a lot of inconsistency. We've had one doctor think it was time to wean him from his jet ventilator, another upping his settings. One nurse that thought she would try to not give him extra sedation before his xrays although the nurse the day before clearly outlined he still needed it.

Poor Aiden is fed up and he's back up on his numbers and his CO2 levels have been higher. And we are fed up too. So we have called for a care plan meeting, and we are going to sit down with everyone and lay down some consistency laws as well as establish a stricter care plan and guidelines for him. The soonest this can happen isn't until next week, so we are hoping and praying we get some consistency until then.

I'm so glad we went through this before Aiden. I'm starting to truly believe a big reason Lydia was in the NICU was to help prepare us for Aiden. I would be a lot more stressed and anxious if I didn't already experience this roller coaster ride once. And I'm glad we are going into this having already learned our lesson about advocating for our children.

April 04, 2016

Spondyloepiphyseal Dysplasia Congenita - Furthering Aiden's Diagnosis

I dare you to say that 3 times fast, cause David and I sure can't! The geneticist told us to just remember SEDC Dysplasia.

The geneticist was able to get a few xrays done (hooray for Aiden tolerating that!), and based on those this is the diagnosis they are now leaning towards.

My head feels like it's swimming right now with so much new information. While I understand the diagnosis and why they are leaning to it, I find myself struggling to articulate it to anyone else. I feel as if I've been thrust into a very new world and it's going to take my brain a while to catch up.

They no longer think Aiden has Achondroplasia (most common form of dwarfism), and are now leaning towards
Spondyloepiphyseal Dysplasia Congenita. This isn't set in stone yet either, but it's definitely a step towards the right direction.

No longer think Peter Dinklage, and picture Warwick Davis (the movie Willow) or Kenny Baker.

Again I'm in no way qualified to be discussing medical terminology and diagnoses. This is coming from what the geneticist explained to us and how I understand it. 

Achondrogenesis and SEDC are both stemmed from the same gene mutation collagen type 2 alpha 1, or COL2A1 for technicality. Achondrogenesis is the possible diagnosis they gave us while he was in utero that is extremely dangerous to babies. They typically only live for 3 hours and is why we were expecting a funeral. And while I'm sure there are some significant differences along the genome, the main difference between the two is if the baby lives or not.

The physical pointers for this diagnosis are still within his skeletal structure. He will have normal intelligence, and can grow to be anywhere from 3 to 5 feet tall. His small chest and underdeveloped lungs are a big indicator. Kids with Achondroplasia  (most common form of dwarfism) don't typically have an issue with their lungs and chest. Aiden also has a short neck and pubic bones that aren't yet fully ossified (still soft bone, the cartilage hasn't fully hardened yet).

Another pointer to this type of skeletal dysplasia is that the discs in the bottom of his spine are thinner. This causes him to have a short trunk.

Some of the other problems individuals with SEDC dysplasia may have in their life are hearing loss, near-sided vision with a risk of detached retinas, and club feet. Aiden's feet turn in a little bit and will need to be put in a cast eventually. He already passed his vision test, and he responds to our voices so we aren't worried about his hearing right now. When he is no longer sedated they will give him his hearing test.

As we sat and talked to the geneticist I made the comment that it sounded like we would be in and out of lots of doctor appointments. His response surprised me! He said, "No, not really. The key is to get him past the newborn stage and get those lungs working. After that he can have a relatively normal life."

That was music to our ears.

His nurse was surprised to see how calm and happy David and I were after speaking with him. After we explained what we've gone through with him, she said, "Oh, well no wonder you are taking this so well!"

And calm is how I feel about this diagnosis. Sure I also feel overwhelmed, there is still a level of uncertainty. And this isn't a confirmed diagnosis for him just yet. But when it comes to actually taking care of him and having a child with this type of dwarfism, I feel honored to be his mom. This is so rare that they don't even have a set incident number for it. What a special kid I get to have.

April 02, 2016

The Best Gift - Holding Aiden For the First Time

Aiden is climbing back up again. He has had, as his nurses have said, his best 24 hours so far at the NICU.

His oxygen needs are down to 30%, and his ventilator has gone down slightly. They are upping his feedings. His CO2 levels have been steady enough that they felt comfortable pulling out his artillery PICC line (which is a pretty big sign he's improving, as they tell us). His neonatologist thinks he's doing well enough that they want to start pushing him a little bit and see what he can tolerate. It may give him a few rough days again, but as she said, we can't let his body get used to being intubated either. We need to start helping his body learn how to sustain itself. And I agree, we need to slowly push him along.

He's been such a champ at keeping himself more calm, that the nurse surprised me with the best gift today.

When the charge nurse came over to give us our update, she turned to his nurse and said, "Have you told her yet?" His nurse laughed and said, "No, I was waiting for you!" When I asked them what, his nurse turned to me and said, "How would you like to hold him today?"

My heart felt as if it burst!

My baby boy is 18 days old and I finally got to hold him for the first time. 

It took his nurse and three respiratory therapists to bring him and all his equipment over to me. And when they finally laid him in my arms, I broke down into tears. 

Time seemed to slow down as they hurriedly scurried around me, ensuring the seemingly endless amount of tubes were securely attached to my shoulder. Once they got everything in its place, they jokingly ordered me not to move a muscle. I laughed with them. Believe me, I wasn't going anywhere!

His tiny body tensed as they moved him. He looked like he was going to panic, but he instantly relaxed when I snuggled him close to me. And I instantly felt as if all my feelings of guilt and uncertainty melted away. 

His perfect little body felt like nothing in my arms. His ventilator attached to my shoulder felt heavier than him! His entire body fits in the crook of my arm perfectly, with his feet barely stretching to sit in my palm. 

Aiden was so relaxed and content. As I talked to him he would give me little squeaky coos in response. And as I kissed his little hand he would reach out for more.

The hour and a half I got to spend with him was heaven. All my anger softened. All my prayers pleading to let him live felt answered. And, at least in that moment, all of my fears were hushed. His sweet nurse told me she knew we both needed this so that we could feel this connection and both continue to heal. I owe her more then I could possibly give her in return. Both of us definitely needed it.