Update on the Family...

Liam is 4 weeks old today! I'd like to say that time has flown by, but unfortunately watching every day go by without him being home with us really slows things down. He is doing so well though! He's had some major accomplishments over the past week!

On Monday (2/21) they lowered his oxygen saturation and flow to almost nothing, and while I was worried and upset that his breathing went sky rocket again, he was completely taken off of it by Tuesday night. He must have listened to my pep talk that night, and has controlled his oxygen numbers ever since. I told him if he continued to keep his numbers up, that they wouldn't put the nasal cannula back in... I am sure he appreciates having it out, as he always pulled it out himself anyway. ;)

He is still considered tachypneic (ta-kype-nic), where his breathing is slightly elevated, but for the majority of this past week, he's been in the 70-80 range on his bpm's. Because of this, he's been limited to the number of feedings he's allowed to take by bottle since the rapid breathing can cause asphyxiation. He's also still really sleepy during most of his feedings which prevents him from bottle feedings as well since it takes a lot of work for him to initiate eating on his own. Over the past 36 hours though, he has actually taking MOST of his feedings by bottle, and so we think he's finally starting to turn the corner there, however they really try and make sure all his sats are controlled before attempting.

The past few days more and more of the nurses are beginning to talk about him coming home which is extremely exciting. We still don't know a date, and it's still up to Mr. Liam as to when the light bulb will come on, but it's definitely close!

For Liam to come home, he needs to keep his breathing under 70bpm consistently, regulate his temperature, continue to gain weight and take all of his feedings by bottle or breast. He is past the weight limit for discharge already, weighing it 5lbs 3oz as of this morning, and he seems to have control of his body temperature for the most part, so really, right now we are trying to focus on having him take as many feedings by bottle in 24 hours as he can. The 24 hour rule is a tricky one though. He can do everything perfect for the first 23 hours, and have one tiny thing go wrong (breathing spikes, failed feeding, etc) and have the entire 24 hours start back over.

I am hoping for a birthday, "baby coming home" gift, but at the same time, I just want Liam to be ready and on his own time. Of course that doesn't stop me from giving him daily hints of what I want... But who knows! Dean and I have just settled on his original due date of March 17th, so if it happens earlier, then we will just be pleasantly surprised! Again, he still has a few things to work on, so we ask that you continue to lift Liam up in your daily prayers. He has come a looooooong way, and I now understand how amazing the power of prayer really is!

As for the rest of us... Jax is doing wonderful and has really started to understand who Liam is. We show him pictures every day of our visits, and although he has gotten confused a couple of times and thought Liam was baby Jaxon, it's easy to understand! :) The other day Jax drew a picture for Liam's isolate, all the nurses thought it was so sweet! Unfortunately, with the RSV and Flu season in full force, the NICU has banned all sibling visits until further notice, so the next time Jax gets to see Liam might be after he is discharged and coming home!

I am keeping myself very busy and have been to see Liam everyday! It's basically like a full time job, but it's so worth every minute! Of course I am tired because I either spend the whole day with Liam, or I go to visit once Dean gets home and after the 7pm shift change. I've been extremely blessed to have help with keeping Jax during the day from my Mom and my Mother in Law, Sharon. My mom was here for the first 2 weeks and helped out so much!!! Sharon has been a saint and made herself available to me almost every time I've asked (thanks again Mom's!!), and the days that she can't, Dean works from home to allow me to be with Liam. When I'm not visiting him, I'm racing around the house after Jax and trying to keep up with his craziness!! I know once Liam comes home, I am going to have to figure out a way to manage mommy time, but for now I actually enjoy having a break from one to focus on the other!

Dean has been equally busy with work, watching Jax and trying to get up to see Liam as much as possible. Since Jax can't see Liam right now, and there is a 15 minute rule for kids under 12, we rarely get to go see Liam together unless it's late at night. Dean has really been supportive of me spending most of my time up there since I'm really trying to get Liam to breast feed, and so it's important for me to be there for as many feedings as I can be which cuts out the time he usually gets to spend with Liam. I hate that he doesn't get to spend as much time with him, but he's also much more patient and again, would rather me be up there working on his feedings.

Some days are harder on me than others, emotionally and physically - but I just keep focusing on Liam getting better and able to come home; having my family all together, and somehow then, I THINK I'll be able to rest lol. So that's where we are right now.

Liam is such an amazing little boy! He's a fighter and he's determined, but most importantly he's had so many thoughts and prayers and God on his side. I'll say it again, I've never been a super religious person. My faith has definitely grown over the past few years, but there is absolutely no denying that Liam and I are both here because of Him. I've learned some very important things over the past few weeks, and while I may never understand it all, and I don't expect to, I will try my hardest to never doubt again...

Thank you all again for your support, concern and most of all for all the prayers... It's truly a blessing to have it all.

Xoxo
Shylah

Sunday Funday...

Last Sunday was such a gorgeous day, that we decided to focus our whole day on Jaxon, and just have fun!!!

You're never too old to ride a pony right??

Okay, maybe they are designed for 2 year olds...


LOVE this sideways smile...

After playing at the park all morning, and after our visit to Liam that day, we were invited out to our dear friend, Josh Swatzell's grandparents farm to do a little calf feeding, and tractor riding...

Of course I was the excited one...

This baby cow had me hanging on to dear life to this bottle... I would hate to be this baby's mama!

Me and my Bug!!! Fun Day!!!

Fun!!! Jax even got to drive!!

Jaxon and Liam...

After almost 2 weeks, we finally got Jax in to meet baby Liam. We had been waiting more or less for Liam to lose his "jewelry", but also had been waiting for Jax to lose the runny nose and cough he had.

When we took Jax in (2/12), I unfortunately had a perfect scenario built up in my head, that Jax would want to hold Liam and would be sweet and gentle and know exactly who he was... Buuuuut that's not exactly what happened.

When we finally got Liam and Jax situated, Jax burst into tears along with a full bottom lip pout, and he told us to "put him back" while pointing to the crib we took Liam out of... This was also the same night they told us Liam was going BACK on oxygen and that he had lost too much weight to stay in an open crib, so they would be transitioning him to an isolate...

So of course with hearing that, and seeing my sweet 2 year old refuse anything to do with my other sweet angel baby, I too burst into tears...

Jax kept looking around at all the other babies and seemed 100 times more interested in them, so through my tears I told Jax that he was out of luck, that the little boy baby swaddled in my arms was what he got. Lol....

By the end of our 15 minutes with the two, Jax finally muttered through clinched teeth "I love you Yeeyum" and kissed his forehead goodbye before running happily out!

So that was the first encounter....

The very next night (2/13) we took Jax back to see Liam again, and this time, Jax seemed to be more interested. Liam had been moved back into a different room that was much more quiet and less full, so his attention stayed on Liam pretty much the whole time. He even told Liam he loved him and kissed him goodbye without too much coaxing from us.

Yesterday (2/16), we all went up to see Liam and thankfully Jax had been talking about him a little more, and when we finally got Jax settled down with Dean in a big comfy chair, Jax was sweet and precious. He literally couldn't keep his hands off him. Every time Liam would make a single noise, Jax got this worried tone in his voice, and would gently say "it's okay, don't cry".

(Jax hugging Liam)

(Happy touching him...)

(My sweet boys!)

Then after flirting with the nurses, Jax announced to everyone, "Yeeyum, my baby butter". He snuggled with him, and gave him several hugs and kisses, and I think finally understood, that Liam is OUR baby, and he'd be home soon to play with Jax and his toys!

Each time we take Jax in, he seems to get a little better, and although he doesn't quite understand how fragile Liam is, he seems to be coming around with the thought of Liam coming home to live with us.

We are hoping to get Jax up there to see him more often, but it's kind of hard with an hour drive both ways and him only being allowed in the NICU for 15 mins total. We'll make it work eventually, but for now we talk a lot about Jax's baby brother and how much fun they will have when Liam can play with Jax and be big and strong like him. I am sure when Liam does come home, we'll have our up's and down's until Jax fully understands who Liam is, but for now as with everything else, it's a day at a time, and a learning experience for us all...

Sorry for the delay in posting, but it's been a little hectic :D

I've also updated the album to the right with additional pictures from the past few visits...

Please continue to send your thoughts and prayers to Liam. He still has a ways to go, but is doing so much better each day.

Thank you all so much!

Love,
Shylah

Update on Liam...

This is my fourth attempt at getting this updated... Hopefully I'll get far enough with an update on Liam and actually post. Thankfully my last draft is all wrong now because he is doing so well....

Where are we at today?! (2/9)

Liam is doing exceptionally well. He is almost off oxygen, and we are keeping our fingers crossed that the Echo scan he had yesterday shows that his PDA Valve is finally closed. From my earlier (non-posted posts), I explained a little bit about what the PDA Valve is: This is a valve in the heart that is typically closed at birth, but in preemies sometimes needs help by medication and/or surgery. Once the valve closes, he shouldn't need the assistance of the oxygen, since this valve controls the flow of blood and oxygen to the lungs. Liam has received several treatments with the medicine, Indocin to help aid in the closing of this, but has not had any as of Friday night. Last night the technician that performed the Echo scan, said she thought that it was finally closed, but we are still waiting to hear back on that today.

He is getting breast milk though a feeding tube, and this is due to his rapid breathing. He has not quite figured out where he needs to be on his breathing respirations, and so there is a risk there that if they introduce a bottle that he could choke and have other complications. He started getting breast milk on Friday. He was started at 5ml, and today he is up to 36ml!

Yesterday (2/8) - was the first day that Liam and I got to do "Kangaroo Care". This is basically just skin to skin holding, that is very therapeutic for the baby (and mama in this case! - Pretty sure my bp was perfect while I was holding him!). His breathing slowed all the way down to where they wanted it while I was holding him. We even fell asleep together, which I totally loved! When I put him back, his breathing accelerated back up to where it had been- he needs to be in the range of 60-70 breaths per minute consistently. This morning we were told that he was in the high 80’s – so he is starting to figure it out, but we still ask that you send your thoughts and prayers to Liam for this specific need.

He should also be off all his fluids through the IV either today or tomorrow. Yesterday they were talking about taking him off everything, but wanted to make sure he tolerated his next feeding amount before they took the IV completely out. I am hoping to walk in and see him today with only the oxygen in his nose. He had to have his central lines taken out of his belly, and they tried to place the IV in his hand and foot, and it wouldn’t stay in, so they put the IV in through his forehead… Yeah… I was a little upset seeing him the first time with it there, but now I am used to it, and just call him my little pumpkin!

We are unsure how much longer he will be in the NICU. He has to breathe on his own, and correctly, as well as take all his feedings by nipple. We are hoping to have him home in the next two weeks, but as all the Dr’s and staff say, it’s completely up to the baby on when they figure things out and have their “ah ha” moment. We try not to rush Liam at all. We are extremely thankful that we even have a baby to post about and to be so proud of.

He really seems to like having visitors and loves being held and making faces at people. He is also a master of finding ways to pull tubes out, and set off all the alarms. His most famous method is by wiggling his toes and getting the cords wrapped in between them, which is a really fun game for him by making the nurses panic and completely unswaddle, find the pinched cord, reswaddle, then set the machines all back to normal. =) He’s testing people already!

We have not brought Jax in to see him yet. We are hoping to do this, this weekend, but really wanted to have Liam lose some of his “jewelry” before we took Jax to see him. We don’t want Jax to freak out that “Yeeyum” doesn’t look like the babies he see’s. We also wanted Jax to lose the runny nose and cough he had juuuust to be on the safe side.

Hopefully by finally getting all the baby stuff ready in the house (Thank you Honey), Jax is starting to understand that the baby mommy had in her belly is real, and finally about to come home. We have been practicing being gentle and easy with Jaxon’s stuffed Ernie. Thankfully Liam’s nose isn’t as big as Ernie’s, and hopefully this will prevent Liam from being pulled out of the baby swing by his nose and dropped on the floor lol…

I am just so thankful for all the support, and prayers we have received. It has been so reassuring to lean on others on our down days, and have so many people be there for us. We’ve had home cooked meals delivered, help with Jax so that we can commute back and forth and all of our friends and family constantly updating others and passing on information so that we can try and focus on being w/Jax and Liam. =)

I hope this updates most of you in the area’s that you had questions on. Once we get the little guy home, I will probably post his story so that everyone knows how truly amazing he has done with all he’s gone through.


Please let me know if you have any additional questions.

Love always,
Shylah

Miracle in the Making...

Our Miracle…
First and foremost, I feel like I need to thank the Lord very generously for the last three days of my life. I have never been a super spiritual person, and have always held my level of Faith inside… but I think that if you don’t believe in GOD now, that there is something seriously wrong with you.

I am lucky to be alive after hemorrhaging and losing half of my blood supply due to placental abruption that occurred early Sunday morning. Liam is extremely lucky, and there are still a lot of people that think God himself came and helped get Liam started.

My morning Sunday started like any other, but once I had gotten up and moved downstairs, made coffee, and started my day I felt a very sharp, persistent back ache in my lower back. It was enough to concern me, and have me start looking up pre-term labor signs… but after about a half hour of strictly back pain, the pain moved directly in front, under my belly and was a constant and severe cramping. At first I thought, ok… boy was I wrong if I didn’t think I would be able to tell what contractions were, and let them go for a few minutes. Dean kept asking if they would stop or if they were constant. I couldn’t really tell if anything stopped or got worse, I just knew I was in massive pain and that, that was as close to labor contractions I could manage. I also had thoughts that if these were just the beginning contractions, then I was really going to be in some trouble since the pain I had was more severe than any pain I’ve EVER experienced before.

After about 15 minutes of straight pain, I decided to go up and take a bath thinking one, it might help the pain, and two, I hadn’t felt Liam move since before I really got up, and that would at least ease my mind some. When I got into the bath, I immediately started poking on my belly, and rubbing trying to get Liam to wake up and get mad enough for one of his reassuring kicks. After 30 minutes of me rubbing, and not getting a single movement, is when I really started to panic. This child as many know, never stopped for more than a half hour at a time, and I could always seem to get him to move by doing something. This time I couldn’t.

After I got out the bath, the cramping kept getting worse, and so I decided to call my dr’s office and lie down on my side and just see what they said. After I got a call back from the on call Dr. she had advised me to do a fetal kick count, and if I wanted to, to just come in to the hospital in Johnson City and they would be there to take a look… I think I waited a whole 5 minutes before I collapsed on the floor, screaming out in pain, and telling Dean to call his parents, get someone, anyone over to our house so we could just go. He called his parents and couldn’t reach them at first, so he called Rachel and she was basically on her way… Then it got even worse to where I said, let’s just take Jax with us to the ER, but we have to go now!!!

My current OB and the hospital we had planned on delivering at in Johnson City was 45 minutes away, and I knew that I honestly couldn’t handle the pain for more than a few more minutes. I literally kept saying I am dying I am dying. So we decided to come to the hospital closest to us, where Rachel met us, and had already briefed the staff (Thank God), so they were ready for me. Once they got me in a chair and wheeled to a room, they started trying to find vital signs on Liam…

The scariest words I’ve ever heard…
After me screaming, and rolling, and kicking in pain, they were finally able to strap a fetal monitor on me, but could not seem to find a heartbeat or get any movement out of Liam. Of course Dean and I immediately were panicking, but I honestly was in so much pain, I couldn’t think straight. Come to find out I had lost over half of my blood supply, and I was going into shock. About 15 minutes into this scene, the on call Dr finally came in, and did an ultrasound… when they finally got that up and running, I was in even more pain, and the cramping just kept coming. That’s when my world stopped after hearing… “I want to make sure the baby is even alive before we do anything else…”

I can’t fully explain to anyone what those words did to me. I tried to stop crying and screaming, and think of Liam. The only thing I could do was cry out to God to save my baby. Immediately every emotion went through my body. I had my husband there with me, but I didn’t get to say goodbye to Jax, or that I LOVED him. I literally thought I was going to die. I tried to focus on my breathing like they asked, but I just couldn’t. Once the Dr said she saw a little flutter of a heartbeat on Liam, Dean said she just went into overdrive and started calling out orders left and right and prepping for an emergency c-section and putting me completely under.

30 minutes later again, the anesthesiologist was finally on board, and literally had just given me IV fluids as they were cutting me open. At that point they said it didn’t matter, they had to go in. Thankfully I only remember counting to three… and not getting sliced open.

When I woke up, I had no idea where I was, what happened, if I had a living baby, I was just scared and groggy. Then Dean came in, and told me that as of now, we had a pretty little baby boy who was fighting harder than anything. He explained to me that Liam came out a stillbirth, and that it took his pediatrician a full 9-10 minutes to revive him, but he was breathing on his own after that, and the Dr was extremely happy. He told me what I had gone through and of course that meant nothing to me… but I needed to thank the one Dr. that saved my life, and another Dr. who refused to give up on Liam who had saved his. I think I was still in a state of shock hearing all of this from Dean, but after talking to the Dr’s and the staff, I know how lucky we both are to be here right now.

After I left the recovery room, the hospital staff said that they would bring Liam in for me to see him before he was air lifted to Johnson City’s Children Hospital. I knew he would go there, and that there was nothing I could do… so I just begged them to let me see him. When I saw him, of course emotions that only a mother can feel , flooded my body – but I was also so scared for my itty bitty little guy not knowing if he would survive the helicopter ride or the trauma of being moved so fast… I didn’t get to hold him, or really see him that well because of the unit he was in, but I did get to touch his hand, and rub his little leg long enough for him to open his eyes and give me a few kicks. After that, they took him and loaded him up right outside my window, and I got to see the helicopter lift up, and fly away.

My mother in law, Sharon decided to follow and go to the hospital Liam would be at, and keep him company and all of us updated as we had to take care of Jax, myself and Dean. Jax ended up staying with one of our dear friends Brandi, and everyone else hung out with me until they knew I was stable and understood what was going on with Liam. And from there I just tried to rest as much, and let my mind be free of bad thoughts, and just kept thanking God and praying for Liam and myself to come through this.

Had I waited any longer to call the Dr, had we decided to drive to Johnson City, had we waited 5 more minutes, I know Liam would not be here, but I can’t tell you if I would be here myself to tell our story.

It’s been a very rough, emotional but incredible journey over the last 36 hours. I am so thankful I am here to even experience this, and that Liam is fighting. He is not out of the woods at all. He came 7 weeks early, and obviously wasn't quite done cooking, but he is stable and staying strong considering! They are keeping him on a ventilator, and he seems to respond well to that, but as of this morning, he kinda went backwards, so they upped the levels on it. They plan on doing an MRI today of his brain to see if there was any damage caused while he was non responsive. I am praying that there wasn’t, but we will get through it if there is. His Dr seems to be pretty optimistic that since he has not had any seizures, that, that in itself is a good sign. We just all ask you to continue sending your thoughts and prayers to Liam and I, and pray that he will pull through.

We have a lot of information to take in and to learn and will try our hardest to keep everyone updated on Liam’s health and status. I will have to have patience and try to understand a lot of things that he is going through, I just know once again, that I am lucky and blessed to have a miracle baby and that GOD had everything to do with Liam and I being here today.

Shylah