Monthly Archives: November 2008

A Phone Call Would Have Been Nice…

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Jack had to be taken off his regular ventilator today and put on a different type of ventilator called an oscillator. It’s a high frequency ventilator that does a lot more of the work for him – in fact, it is making it so he is taking 10 breaths per 1 second. I don’t even understand it all myself, so it’s hard to explain. I do know that it’s a little more intense then the regular ventilator. It makes his little body shake, and it’s not fun to look at. He had been riding at “stable” for the past couple of days, but last night his numbers took a little dip so they thought it best to switch him. Since they made the switch, he has continued to be “stable”.

jack-004It was hard to walk in this morning and see him on the oscillator. We were extremely dissapointed that they did not call and tell us about the switch. It was not a fun surprise, and it is, like I said, an intense machine. We have had a hard time with our nurse the last couple of days (our daytime nurse) and have found ourselves getting frustrated with her often. She has been dishonest with us several times, and doesn’t seem to take him as seriously as we would like. I don’t think it is fair that parents should have to worry about the competency of their nurse on top of all the other things we worry about. I was telling my mom that if there is one bad thing about having a great nurse – it’s being able to recognize when you have a not so great nurse. I think that I have finally figured out who to talk to about being unhappy with this certain nurse, so I will request to NEVER have her again.

So today was an emotional day. Seeing him on this new machine is hard – especially when we don’t know what it all means as far as how he is doing. It’s hard to get a straight answer from anyone – especially when they don’t have straight answers to give. We had a nice visit from some friends today as well as from our bishop (who is also our friend). They reminded us how much everyone loves and cares about us. We know there are SO many people thinking about us and praying for us at this time. We are so grateful to everyone for their love and concern.

Last night I wanted to hold Jack more than I have wanted to this entire time. It just hit me so hard how badly I wanted to touch him!!! We love him too much. Although intense, we are hopeful that this new machine will work for our little Jack.

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Thanksgiving in the NICU

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After contemplating writing a long list of things that we are grateful for this Thanksgiving, Adam and I agree that really what we are most thankful for is: love. Love is what is sustaining us during this difficult time, love is what got us here in the first place, and love is what we will have to hold on to when all is said and done.

But most importantly, love is the reason why no matter what happens, everything will be okay.

“For God so LOVED the world, that He gave His only begotten Son, that whosoever believeth in him, should not perish, but have everlasting life.”

The entire plan is based on Love. From the complex love on which our entire existence is based, to the much simplier love that Adam and I have for our Baby Boy.

For us, a lot of things have been put into perspective the last week or so. Things that we once thought were so important or things that we once didn’t treat with the importance that they deserve; have been cast in new light. Suffering the way we have, and watching our son suffer the way he has, has taken real love from our peripheral vision and thrown it into the very center of our gaze. Our wish this Thanksgiving and holiday season, is to always continue to recognize the importance of love; especially the love of our Father in Heaven and our Saviour Jesus Christ.

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*There are some new pictures in our Web Album.

A Life With No Weekends

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We found out that the little “hiccups” that I wrote about in my last post are actually seizures. He appears to be having a seizure about every 4 minutes. If you are beyond belief, then you are not alone. I can’t even believe that we have to throw that into the mix now. Seizures are something that is tied with PPHN (Persistant Pulmonary Hypertension) but EVERYONE is baffled as to why they are happening SO frequently.

So they are going to try medication to see if they are able to stop the seizures. I am not sure what the next step is if the medication doesn’t work. I’m pretty sure that it won’t be long before Adam and I both go crazy from this little waiting game. In fact, I am pretty sure that we are both already at wit’s end. What’s after wit’s end?? I guess I’ll let you know.

With the seizures, it’s hard to be happy about the numbers (and also since they took an ECHO of his heart yesterday and see no change in the PPHN) but his oxygen has been sitting at about 97% and his heartrate has been in the 140s pretty much most of the day.

On a positive note, both Adam and I got to change Jack’s diaper today. You can’t even imagine what that meant for either of us. To be a part of what is going on with him was more overwhelming then we ever imagined, but in a good way. To touch his legs and wipe him and see his little bum was wonderful. I was so scared I wasn’t doing a good job, and also that I wasn’t being careful enough with the cords. I never imagined a diaper change to be such an emotional experience.

When I mentioned last night that I knew the nurse who would be taking care of Jack, I had not yet had the chance to talk to her. She was so wonderful and kind and she was already aware of what was going on through her sister-in-law and told me she had been praying for us. She let me jump in and be involved for the first time (I took his temperature and swabbed out his little mouth last night). She is so competent and besides being a sweet person, she is a great nurse. We are lucky to have her here. She also took off Jack’s little mask and let me look at his whole face for the first time in a long time. He. Is. So. Cute.

I am hoping to post some new pictures tomorrow. I have a long list of things that I need to do (i.e. laundry, load pictures on the computer, run to the store…etc.) and I often find myself thinking: I’ll do it this weekend. Not really realizing that I now lead a weekend-less life. I did get to the store today, and I do plan on getting the laundry done tonight. Pictures are next – so check back tomorrow night for those.

Thanks to all who care so much about what is going on with us and checking our blog so frequently. We can feel your love for us and Baby Jack.

Whatever He Wants: Whenever He Wants It

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Adam and his mom and my mom and my Megan just left for the day. Normally Adam would have stayed here with me until it came time for the last shuttle and then we would leave together, but I thought that Megan needed her daddy tonight. It’s hard to leave at the end of the day, but at the same time – the sleep is a necessity and so also is the break from just sitting here watching and waiting on Baby Jack to give us some indication of which way he is going to go. I do wake up all through the night, willing the phone to NOT ring: we’ve all heard that “no news is good news”.

Today has been much the same as the last couple of days, although his numbers continue to look better. There is one little hiccup in our stability in that; for some reason – unknown even to the doctors and nurses, every 3.5 minutes or so, little Jack will move his hands and feet and the number that is supossed to be high: will drop, and the number that is supossed to be low: will rise. It is so cyclic that Adam actually sat and timed it for a good hour or so with no change. It is frustrating because without this little cycle, we would think that he would just sit at a good level of stability. Instead we have to watch him go through this unexplainable cycle and worry if the reason why he is moving (he usually never moves – which is good since he is so sedated) is because he is uncomfortable or something.

So besides that, we would just be floating along. Adam is especially frustrated by it. I am a little reassured in that the nurses and doctors don’t seem overly concerned. I would feel much better though if it wasn’t happening.

The nurse tonight is actually the sister of one of our friends from church down in Ames. She actually requested Jack for the night (and I imagine the next several nights). I actually met her last month at her sister-in-law’s baby shower. I am thrilled that she is his nurse. I was very impressed with her when I met her. A tender mercy? Probably.

Speaking of tender mercies…with all the things that I have posted as far as what is going on with Jack, I have not yet taken the chance to talk about how this has touched us: on a spiritual level. I don’t think it took Adam and I long to accept that whatever happens with Jack is God’s Will. In fact, I don’t think there was ever a point where we thought otherwise or even had to come to terms with that. While I have had many conversations with God explaining what I would like to see happen, I know that in the end, we will both accept it without question.

Having said that, this is, of course, still very difficult. I guess part of it is just not knowing just what God has in store for our family and our little guy. Another part is just watching his poor little sick body and not being able to do a thing about it. Still other parts are wrapped around so many things. So. Like I said. It’s not easy.

But I have to remember that I signed up for this. So did Adam. So did Jack. We made the decision to come to this Earth and with it came all the trials and struggles that we as mortals face. We made the right decision. And as we have continued to lead the lives that we lead, we have continued to make decisions that have lead us on the path to an eternal family.

Without even really getting to know Jack (we don’t even know what he really looks like…he is so swollen and so covered in tubes…) we can still tell that he is such a sweetheart. We love him so much and we can’t wait for him to pull through this and decide to get better. Someone joked today that when he is a teenager and he asks for the car keys, I can just say “no” because I have already expended the alloted ammount of stress and worry that he is allowed. I told the person who said that that I will be just the opposite. My Jack can have whatever he wants; whenever he wants it.

Still Stable

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(I started this post this morning and I am just now finishing it – about 12 hours later).

10:00am:
I arrived here to be with Jack a little while ago and after getting the run down from the doctors and nurses, and then calling Adam (who is with Megan this morning), I am now settling into my daily research.

When I walked in, I thought that his numbers looked really good. They tell us not to rely on the numbers (the monitor above his bed tells us his heartrate, his oxygen levels, blood pressure, etc.) but really that’s all we have to tell us how he is doing. A newborn baby should have a heartrate ranging from 100-160 beats per minute. Jack’s heartbeat usually ranges from the high 170s to an occasional 200 or above. Yesterday it mostly hung out at low 180s. I saw it hit 169 once yesterday and I was so excited. When I walked into today, it was at 158. And since then I have seen it as low as 149. It seems to be hanging out around 158-165. Which is great. Although again, it doesn’t really give us a good indicator of how he is really doing – but I know for a fact that to be in the 190s or 200s would be a bad indicator, so I am going to take the low rate as a good sign all I want.

The other thing that I like to keep my eye on is his oxygen. Right now he is on a ventilator which is providing him with 100% of his oxygen. As he utilizes this they way they want him to, they will slowly take down the percentage they are providing him with. At Blank, they had him totally off the ventilator at one point, but since then the lowest the have gone is about 95%. He is just not ready at this point to be weaned from the oxygen, and they base that on how well he is using the oxygen they are giving him: which is another percentage. Usually that number has been pretty good. I don’t think I have ever seen it below 80%. Usually it’s about 88%. Right this second he is utilizing 94% of the 100% that they are giving him. I have seen it at 100% this morning. I think that as long as it stays about 90% or so for the next couple of days, they will begin the weaning process.

So the two numbers that dance around my head all day and all night are the heartrate and oxygen usage. Adam looks at a couple other numbers to tell him how Jack’s doing, so we combine our numbers and we try to take what we can from that.

8:30pm:
It is now the evening as I write this, and Jack seems to have stayed stable throughout the day. His heartrate is a little higher than it was this morning, but the numbers are still okay (170 range). It has been a long day, but I was grateful to once again spend some time with Megan. It is just about time for us to take the last shuttle of the day back to where we are staying so we are getting ready to tell Jack: “see ya later.” We have learned that we no longer say “goodbye” in this family.

Today

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Today was much the same as yesterday. I can’t really say that Jack is doing “good” or “bad”, it’s safer to say that he is “stable”. The nurse describes him as if he is sitting on a fence and hasn’t yet decided whether he wants to fall off the fence or climb over it. We want him to climb. Jack will let us know when he makes up his mind. For now it’s nice to have a break from the ups and downs of the rollercoaster and just ride along. Well, actually, it would be nice to not be on this ride at all. But riding it means that we get to be Jack’s parents, so we’re buckled in for the long haul.

Adam had kind of rough day today. He’s been trying so hard to stay positive for me that he was just beyond exhaustion (emotionally) today. I had a little bit better day today, which probably made it easier for him to not have to pretend to be doing okay for me. He has such a tender heart – and I am glad. I just love my husband. Several people (social workers, nurses, doctors…etc.) have warned us of the stress this can put on our marriage and that a lot of couples can really get at each other at times like these. I know that Jack was born 5 days ago and Adam and I have not once gotten on each others nerves or had to be short with each other. In fact, we can’t stand to be apart. Even if the other one is just napping or going to the restroom, we miss those moments together. In fact, right now I am down with Jack and he is upstairs with Megan and I actually miss him.

It’s nice that this NICU has laptops for rent for use in our room. We have been doing a lot of research. I can’t believe how much my knowlegde base has grown the last few days. And yet there is still so much that I don’t understand.

We are staying at the Ronald McDonald House and I am excited because Megan gets to stay the night with us tonight. I sure have missed her. The other NICU did not allow children under 5 to see the babies, so it was nice that they allow that here. We can all spend time together. I hate being away from Jack though. It’s hard to leave at night. They say they will call immediately if they ever think we need to be here, but I still set my alarm for the middle of the night to call and check on him.

I guess that’s all for now. We’re hanging in there. Just barely, but we’ve pretty much tied a knot in the end of our rope and we are holding on.

Some Pictures

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I have posted a few pictures of Baby Jack Alexander in our Web Album.

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Today has actually been a pretty good day for Jack. We are just watching and waiting and hoping and praying. Yesterday was SUCH a rollercoaster…especially with him being transferred, but also with all the events leading up to that. Today has been so much better. I think I actually laughed today. In fact, I know I did. Adam and I were talking about something and I laughed and then realized how bad it hurt to laugh, which Adam thought was funny so we just kept laughing. I just read this to Adam and we started laughing again which led to more pain and more laughing. Vicious cycle.

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