Kyle's NICU Story in Pictures

Sunday, February 3, 2008

Life in Level 2! - Kelly

Life in level 2, yes... level 2!  Kyle moved to level 2 on monday.  I think they were waiting for me to be ready. nurses kept dropping hints that he was only in level 3 b/c the census was down.  meaning they have lots of room.  Also one nurse said he was to the place where level 3 nurses would not want to have him.  They like the kids that need lots of acute care.  In other words - Kyle was doing great! So on monday I went down there (by myself) John was out of town with work and our NP, Valerie (amazing!), asked if I was ready to move to level 3.  I said sure!  so within an hour - we were in our new room.

I think our nurses (even thought they love kyle) were ready.  Many of them had probably had all they could (over 3 months) of ME for a NICU mom!  i am pretty high maintenance.  I have spent hours a day looking kyle over and for every 5 minutes I spent looking at him I would have 1, okay maybe 2 questions.)  I don't think they are used to parents that are quite so involved.  Now don't get me wrong - they loved me and john being involved - just hard to keep up with lots of questions and requests I bet.  So off to level 2 we went.

1st things 1st.  Culture shock!  Sounds crazy I know, but it is true. This transition has been harder for me than is has for kyle.  I thought level 2 would be filled with gooey nurses that would oooh and awww over kyle, feed him, change him, make his bed perfectly, talk to him during his bath... you know instead of intubating, taking blood, positioning, re-taping CPAPs, giving meds and so on!

however, I must say that no one talks much, there is only one nurse in our pod (one to 4 baby ratio).  They do stay pretty busy - but it really does seem like the personalities are so different.  Needless to say - I don't like it.  I did wonder the other day if they do that on purpose so the parents will be more involved.  I do not have the confidence level that when I am away my child is being loved on!  I sadly enough also do not have the confidence when I am away that my child is getting as good care as when I am there.  All my level 3 favs have said I need to give them a chance to get to know Kyle and get to know me!  Maybe this is true - but for the first couple of days Kyle would de-sat to about 81 or so and they would run over, ask me 10 times if he looks dusky and then before I could respond or tell them what I thought they would turn his oxygen way up!  I am guessing most kids don't de-sat over there or this nurse isn't very intuitive.  actually it was 2 nurses now, maybe 3 depending on how much grace I want to give.  which honestly is not much when it comes to the well being of my child!

anyway - I will say to anyone reading my personal thoughts - Childrens Herman Memorial Hospital is the BEST place for your child to be should you need it.  We have been to both the children's hospitals and even with these 2 nurses that I have not been thrilled with so far - AMAZING hospital!  In the nurses defense I am assuming that the goal is that Kyle would not ever de-sat - I think lots of the kids over there are on room air and so they sat 100% on their own and if they de-sated it would be a big deal.

Thankfully, our NPs are amazing!  Attendings too!  Our NP Debbie was in the room when Kyle de-sated to 82 or so and she turned him from 30% oxygen where he was to 60 or 70%.  So she had a talk with the nurse!  I am so glad she was there.  Then the next day was the same so our other NP Valerie wrote an order to if Kyle does de-sat to give him a chance and then only turn him up by 5% at a time.  SHE WROTE AN ORDER TO HANDLE OXYGEN!  I don't know - something in nursing I would think would be intuitive.... anyway- our NPs are amazing.  they have been the constant through Kyle's care.  Especially Valerie.  She has been there with kyle from the beginning.  She gave us such grim statistics and seemed to encourage us not to get too attached.  I don't think she thought he would make it.  I have since learned that I don't think there is one person in there that thought kyle would live.  and not only live, but he is doing amazing!  Exceeding just about every expectation of a 23 weeker.  He has had some huge hurdles but really seems to be doing good!

So I met with a charge nurse yesterday (again - one of the coolest people I know) and she is working to hook me up with some primaries over in level 2 that are great!

Kyle needs it – I need it.

Kyle is really doing great!  He weighs 4 pounds 11 ounces!  He is taking a minimum of 4 bottles per day – and can take more but only seems to do that when I am there and I push for it.  For some reason the nurses don’t want to push him – again – maybe they do not know him.  But if I am there he gets a 5th bottle feeding that day also!  So soon I’m sure his NP will write an order to increase his bottle times b/c that is one of the ways he comes home is when he is taking all feeds by bottle consistently!

He is doing great at this – it takes him about 20 minutes to finish all his food!

His oxygen flow has been weaned to 1.5 liters and will need to come down to ¼ or 1/8 before he can come home on it.  I am hoping he doesn’t need it but there is a real possibility that he will.  His oxygen requirements are between 21 and 30%!  His hernia is getting bigger and will have surgery but they are not talking about when yet – it will be the last thing they do b/c they want him to have as much weight on him as possible.

Kyle will have his MRI this Thursday.  I will be in the room with the neonatologist so maybe I will get some insight into what he is seeing.  Other than that the official results take some time.

Kyle is having some really great awake time – he looks around, makes lots of baby noises and loves to listen to me talk to him.  He is very sweet natured and ADORABLE!  He does get pretty upset when you wake him to change him just before he eats!

Life at home is hectic.  I feel like I am juggling 3 people lives instead of just my own.  I hear people mention so often – you just need to take time for yourself.  Or it is important to take time for you.  Those are unrealistic statements.  It is hard enough to make time for my husband – which he won’t say but I’m not doing a very good job of.  This doesn’t make me feel sorry for myself at all – you kind of just go into a mode of preserving your family.  But for some reason I have this deep feeling others that can not understand it.  Started off as anger and is still a frustration – but more so a desire for all of us to be able to see what God sees in these situations.   Maybe then we, I could really minister to others.  Meaning HELP them in their time of need even if I don’t get it.  A good friend told me that there is a difference between empathy and intercession.  This may be my lesson for these days.   I don’t know that ever could have imagined that someone’s life was like this.  What about kids that have long-term illnesses – I’m talking in and out of hospitals all the time.  And maybe they have other kids.  What about the mother that knows she is not going to live.  It is physically painful for me to be away from my kids as much as I am.  To know that they hurt b/c of my absence.  I can not imagine how these mom’s feel.  A million times what I do.  But still we are the ones called to help them.  How will that woman ever feel peace.  How will my precious friends that have lost their son feel peace.  Maybe just maybe the holy spirit Jesus said would be with us – the one that lives inside us – the one that has the same power that raised jesus from the dead – maybe this has something to do with it. Maybe WE have something to do with it. 

I am having to come to a place of accepting that my life does not look like it used to or like I want it to.  And then I have to find a way to lose the guilt that comes along with those thoughts.  b/c you would not want the other option of not having your child.

I’m working on this!  I am learning so much about prayer – it might actually be more like unlearning instead of learning but it is just as beneficially really.  More specifically I am learning about approaching God.  For me, for my family, and for these others we are called to serve.


Anonymous said...

Well, here we all go with you to the next level of this journey. What keeps coming to my mind is 'WOW God has answered our prayers even beyond what we've asked of Him'.
And I've learned so much from these past 3 months. Again, I will never be able to thank you & John for what you have given me through your days since October 22.
Again, God truly has so much more instore for Kyle & all his family, and all of us out here in blog-land in the days, wks, months, & years to come. I'm excited to hang in there with you all. I want to continue to grow spiritually & learn more about our awesome God & I think HE has chosen Kyle Sherrill to reach many of us out here. I'm just thankful HE reached me.
I hope you'll always remember that I am praying for you all daily...that lots of people (that you'll probably never know) are praying for you all. You are loved!!
Hugs ~ ~ GranMammy B
Barbie Weller - Mansfield

Anonymous said...

We, too, had our favorite (and not so favorite) nurses while Level 2 at Hermann The Woodlands. I truly believe that you are ENTRUSTED and ENTITLED by God to ask as many questions and be as involved as you want to be. I know our nurses were tired of seeing me and answering all of my many questions after 8-10 hours a day EVERYDAY we were there. Know that as more of Kyle's care falls on you, you are that much closer to coming home. Our Cooper came home on an apnea monitor as he decided to Brady the day before we were to spend the night in Care by Parent. God has been so amazing to you guys and it has truly been a blessing in my life as it reminds me how special my own miracle baby is. It has allowed me not to forget that it wasn't so long ago that God brought my family through a difficult situation and that there are constantly others struggling as well. We continue to pray and rejoice at each new success. One BIG thing to let you in on if someone else hasn't: you won't have to go buy a $300 carseat (as we did) to bring home a baby under 5 pounds. Looks like you'll bring home a healthy, BIG (relatively speaking) baby boy.

Amber Graves Hooks
(a high school classmate of John's)

Anonymous said...

Kelly, you are doing a wonderful job! There will always be times you feel discouraged, but do your best to look past them and keep on going. I appreciate your willingness to be so transparent with your feelings!
Kyle has grown so much the last few months, even though he is still so small. I love to look back at the earlier photos and see how much he has changed. We truly serve an amazing God.
Take care,

Anonymous said...

wow, Kyle sounds like he is doing great. Things will start going so fast now, sounds like you are seeing the light at the end of the tunnel. My 26 week twins moved into level 2 and came home without going into level 1. My one twin had to have hernia surgery, I was a mess, but it was simple surgery and he was home in two days. My other twin came home on oxygen and was only on it for three days. He was getting so close before he came home, but they would have had to keep him longer to try him on the lower setting. My advice to you being in level 2 is to try not to rely on the monitors as much. You won't have them at home to look at all the time. I really missed the monitors, they were my saving grace at the hospital, I could see exactly what was happening. I had a hard time adjusting when we went home. You all are in my thoughts and prayers. These little guys are such miracles.

Unknown said...

A blessing God gives us mothers is to put our family before ourselves! There isn't much alone time found with healthy children nevermind one who needs so much care right now...So our Lord has given you the strength to become "supermom" b/c thats the only option right now. You truely are AMAZING and I love reading your blog and watching your relationship with God because it is so real! A real relationship has its up and downs even with the Lord b/c we are still human but he stands strong and in the moment we can't go on, He carries us! My prayer for you today is that soon you will be at home feeding Kyle on your couch or cozy place watching Jack and Jadon run around crazy and dinner is cooking in the oven and you feel like things are finally back to normal...this will come sooner than you think and I can't wait to hear about it!!! May His Amazing Glory shine through Kyle every day! Forgiven through Christ, Kellee Harris, The Woodlands Tx

Anonymous said...

Hey Kelly & John-

We were SOO excited to hear Kyle had progressed to Level 2!!Praise the Lord!! I'm sorry we have not commented in a long time, but I am still learning to do this slowly but surely and continue to forget my password!! OOPS! I know you guys have been such a witness to everyone in the NICU and all who visit this blog. I can't wait until the day I check up on you guys and the title is Going Home!! We continue to pray for Kyle's complete restoration, so that as you leave the doctors, nurses and others will know Kyle truly is a miracle. Thank you for allowing us to walk a small part of this journey with you and challenge us in our faith. Also, wanted to ask about Coy. Haven't heard you mention him in a while and in your blog you made mention of a family who lost their little boy. I am hoping and praying it was not him. Please let the family know there are people praying for them, b/c I could not imagine the pain of losing a child. We love you guys and are praying!!!

Stacy, Josh and Sammi Grace

L.D. said...

Just in case you were wondering... we're still reading, still praying for you all, and loving Kyle's progress. Pics were especially great. Love to all.

Rachel said...

you don't know me but I found your blog months ago through a friend of a friend..your family has been a blessing to me. I cry every time I read your entries. God is so good..I am reminded when I read this how blessed I am, and how small my problems really are. Thank you for being a blessing! I am praying for Kyle--he is so handsome!

The Scrapster said...

You are doing great. Remember, God won't give you more than He will enable you to bear. So don't forget to lean on Him. And know that while He is carrying you through this trial, we are interceding for you, Kyle, and your boys. Let us carry you for awhile. You just rest in the Lord when you get a chance. We will do the interceding. I am in awe of Kyle's progress, or should I say God's progress through Kyle's life. Know that you are being lifted up as you come to mind many times a day. May that give you some comfort and peace of mind. Love you,
Debbie Jackson -Crossroads

Anonymous said...

I know you feel like your life will never be normal again - but it will, I promise. My friend who had a 26-weeker two years ago is as busy as ever, but has time to spend with both her girls and her wonderful hubby - and she's a working mom. She too felt she would never be a normal person again, without running back and forth to NICU, pumping (yes, she had to do that too, and wasn't thrilled), talking to nurses and doctors, learning FAR too much about neonatal medicine. But Mary is now a bouncing, bright two-year-old, who is actually a little ahead of her peers. You have so much to look forward to, and I know the major step is actually bringing Kyle home. The pictures are precious (I especially like the one of you giving him his bottle), and he LOOKS like a "term baby" these days. It may not seem like it now, but you are doing an awesome job, Mom! Keep it up.

Anonymous said...

still praying for you

Anonymous said...

Praise God for his faithfulness and all he is teaching you. Our God is good. We will continue praying and look forward to more reports.

-Bill G.

Anonymous said...

PTL on the move to Level 2. Does he get to go home when he reaches 6lbs? My 1 mth old nephew was 8 lbs when he was born and now weighs 11 lbs. Did you get what I sent via Grandma Sherrill? Love, Charlotte

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!