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!
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.
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
1 comment:
Great update Shylah. Always look forward to reading about Liam's progress. He is such a beautiful baby! Love that last picture. He looks so peaceful. It won't be long now until he's home and y'all can start having some normalcy to your lives.
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