today is my first day since kyle came home that both boys are off to school and we don't have a doc appt.
Monday, February 25, 2008
today is my first day since kyle came home that both boys are off to school and we don't have a doc appt.
Friday, February 22, 2008
Saturday, February 16, 2008
Saying goodbye to all his friends at Hermann Memorial Children's Hospital! don't worry, I'll be back to visit.
First bath time at home! Kyle seems to love it here!
Friday, February 15, 2008
Thursday, February 14, 2008
Wednesday, February 13, 2008
Tuesday, February 12, 2008
Saturday, February 9, 2008
Friday, February 8, 2008
Thursday, February 7, 2008
I was just staring at the picture at the top of our blog. that lion was bigger than he was! He is such a courageous little fighter! He has grown so much - 1 pound 3 ounces to under 1 pound to almost 5 pounds! I really can't believe it sometimes. other times I really do believe that God is doing this. that bipolar thing again. I read a book one time or heard someone say that they wanted to get to the end of their life and turn around and not be able to see how they got there; not be able to understand it. that statement was a big turning point for me. It was part of me realizing that I did not want to have some master plan and follow it to a "t" and then get to the end of my AMAZING life and be able to explain to someone exactly how I did it. I would rather live thy mysterious but perfect life God planned for me.
I do still want this and believe this but, I don't know, sometimes it is not so romantic an idea in real life.
so john is out of town. he is gone for til friday at 9 am then leaves again at noon then back on sunday to leave on monday. I am glad for him to be back at work. going, pursuing, writing, working, talking, praying - these are what make him tick. sitting ... not so much. mr. mom - not too often. his writing is going well. I miss him though - not just his help. It is hard to juggle with out him here - he does SO much. I also just miss him. the one person at the end of a day that I can talk to - not guarded - not trying to be positive so people will keep praying - not trying to be this or that to someone - just be me. He is perfect at that - letting me be me. hurt, sad, lonely, tired, mad, or happy with out guilt. I miss him. so do the boys.
kyle is doing good! he had an eye exam today and Dr. Hittner had to leave quickly afterwards so i did not see her report but she said ... and I quote... "perfect, they are absolutely perfect!" I was so happy to hear that! his eyes are great - i'll know more details tomorrow when I see the report. He did have a yucky diaper today - I don't mean like gross diaper - I mean concerning. They are going to watch it till tomorrow and see what he does. He was pretty fussy yesterday - we are praying for him to stay infection free. the is a big deal. sometimes I feel like people think b/c he is alive and b/c I am not blogging horrible things all the time that we are home free. My glass half full self would like to portray it that way - but kyle NEEDS to stay infection free. They cut his bottles back a bit. He may be getting tired or may just not be catching on to how to suck, swallow and breathe all at the same time yet. It is a back and forth thing.
The docs have decided to do the hernia surgery and circumcision before we leave to go home. Some docs wanted him to come home and get bigger - but we decided that we would let him get as big as we can and just before he is ready to come home we will do it at MH Children's b/c then his team of docs are the ones that will work him off the vent if need be and get him back to feeds. They know him and care about him. This is really scary to me - Kyle is labeled with RDS and BPD - respiratory distress syndrome, and bronchial pulmonary dysplasia. He was also on a vent for 8 weeks. I just don't want to see him go through that again. I told the NNP yesterday - now this is a routine surgery right?" I was informed that NO surgery in the NICU is routine and does have risks but they will do a great job. part of me wants to freak out but part of me wants to say "that is just the way you have to be as a doc." So - My hope is that he will come back from surgery to level 2 and off the vent!
Kyle also has a clot (or scar tissue) in his heart. He gets a lovenox (sp?) shot every night to keep this from growing. His NNP is not sure if we can do surgery on this. so not sure how these two will work together.
The biggest thing coming up is our MRI. this is friday at 3 pm. the closer we get the more stressed I feel. Sometimes I feel so convinced that it is going to be perfect b/c God is healing him. but I remember feeling that way when we found out about his bleed. I was so taken back. Physically terrified. I just don't want to be there again. I know God can heal him - I know that in scripture it was faith that made some people well. but I have watched my faith and begging not turn the answer I wanted so many times in the last 3 1/2 months. this gets confusing. My faith or might I say belief in who God is, who the bible says he is has not changed. I am just (I've said this before) learning about who the scriptures say he is vs who my American generation has told me he is. so please pray and ask God to fulfill the promises that many believe he has made to you. so many have confidently told me that Kyle is going to be fine - good - even a king. a great man of God. I believe that - I just want the fear to stop here. I really want a good report. The neonatologist that is doing this research study that kyle is a part of will be in the room and they will let me in the room too. I am of course going to ask 100 questions - I'm hoping for some answers. big deep breath!
Kyle had a good night last night – he had his primary night nurse, which is great! We really like her! I have not even gotten to know her but she came highly recommended by our fav level 3 nurses – so she must be good and I think kyle likes her. And today we have our daytime primary! I really like her too – I have gotten to know her – she is very detailed, very thorough, and even sweet and talkative to kyle! We have had another nurse that is now our daytime primary but I really like her – can’t sign her up b/c she has a student with her sometimes but she is good too! So the nurse thing is getting better!
Please pray for Coy, kyle’s best buddy. He is doing good on CPAP, and got his PICC line out yesterday. Pray he stays infection free. He had some desats yesterday that were concerning to his mom. I am learning that we are a pretty good judge of these things. He was not acting like himself and he has been off antibiotics for 2 days. HE NEEDS TO STAY INFECTION FREE! Ask the Lord to boost his immune system. Also Coy had an eye report that was concerning. Please ask the Lord to heal him. These little guys have so much to deal with – would you ask the Lord to restore his sight to perfection! These are brave prayers to pray and it is confusing to pray and pray and not feel like you have an understanding of it anymore – but God is God and God is Good and He is faithful to his character always.
Sunday, February 3, 2008
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.
- John and Kelly
- 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.