When you smile, the whole world smiles with you

This pic was taken last Saturday he was 32 weeks last Saturday.

Off the Respirator

Yesterday at 1230PM Harrison's respirator tube was removed! He has been on the respirator since last Thursday and has been resting and doing very well while on it. A few days after he was intubated last Thursday, he began breathing over the ventilator and needing it less and less. Sunday through Tuesday it was very difficult to keep his hands off the tube. This was one sign among others that they are looking for when a child is ready to come off of the ventilator. He was trying to pull it out and saying "I don't need this anymore, get this thing out!" One of our nurses joked that he needed to get some baby handcuffs to keep Harrison from grabbing it so much!

Here are a few pics of his face without anything on them! In between the ventilator being off and the CPAP mask on.

Now he is on the CPAP and all day yesterday was very consistent in his numbers and looked like he was doing really well. He is adjusting back to the mask and it may become bothersome over time, but as of now he seems to like it more than the tube in his mouth. Yesterday Erin got to hold him for about an hour and he did great. It's a lot easier to hold him with that respirator out!

There are two things I haven't mentioned yet since last Thursday after all the drama. The doctors wanted to run a series of tests to see if any of his problems last week had anything to do with an infection. They did several blood tests, a blood culture, and a urine culture. Everything came back fine except his urine culture came back with a bug. So they did another urine culture a few days later to determine if it was a false positive. They determined he does have a urinary tract infection (UTI), although he has never acted sick or looked sick. So they began giving him some powerful broad scoping antibiotics to get after any possible infection aggressively. They want to catch something early if there is any chance of him being sick. And from what we have understood a UTI can seem dormant for awhile and then have some significant effects very quickly on a person his size and age. All the while he really hasn't acted or looked sick. And from all the positive affirmation from the interaction with nurses its been really hard to believe he is sick at all. He'll be treated with antibiotics for 7-10 days and he's about 4-5 days into it so far.

The other bit of news was that after all the drama last week they began to hear for the first time Harrison has a very soft, faint heart murmur. When they did his ECHO ultrasound shortly after his birth they discovered a normal reality for a premie Harrison's age. There were 2 small holes in his little heart, one on his aorta and one between his ventricles of his heart. These openings are for 2 small vessels to pump blood from the heart directly to parts of the body bypassing the lungs. One is called a PDA (aorta) and one is a VSD (I think) (ventricle). As a baby grows in utero these holes get smaller as the lungs develop and begin to circulate blood to the lungs. Often these holes close on their own without any assistance as a baby grows outside the womb, but there is a chance he may need medicine to correct or (less likely but still possible) surgery. They will just keep an eye on it to see what happens as he continues to develop and grow. He is going to have another ECHO ultrasound later this week that will be able to show what exactly is going on and any changes that might have happened as he has grown.

The good news is through all this, his heart is really operating very well and it seems like neither of these murmurs are effecting him at all. His O2 needs are very normal, his blood gases are great, and he looks and acts very healthy and normal.

Some prayer requests:

-Pray for the results of this ECHO ultrasound that will happen within the next week. He will get one for his head and heart (both routine ultrasounds they do around 31-32 weeks)

-Pray these antibiotics would help him out and rid his system of anything harmful.

-Pray for our anxious hearts as we balance all this news and take it one day at a time.

-Pray for him to gain strength and grow as he begins to breath more on his own on the CPAP again.

Last Night

Harrison is doing very well today. And even though he had a rough night last night, last night was a lot harder on us than it was on him. Today he is comfortable and resting, and our hearts are in a knot.

Yesterday we left him at noon and everything was great. Erin held him and he performed really well feeding and being held. We left in great spirits as the last week has been pretty consistent and progressive for him.

About 745P while we were on the way to see him for his 8pm Care Time and I got a phone call. It just says, "Unknown" on my phone when the hospital calls and its always a nurse or a doctor giving us an update. These are always a little unnerving, and will continue to be.

So our nurse called to inform us of some changes and that Harrison was fine, but that he was breathing harder and for longer stretches of time than he usually had. They wanted to give him some rest and help him out. She explained that he was going to go on the SiPAP, the pulsing CPAP, to help him breathe.

When we arrived another nurse stopped us at the NICU desk to keep us from going in to see him. She let us know they decided to intubate him back on the respirator and that it may not be a good time to go in to see him. This was so alarming! He had declined so rapidly our hearts just dropped. We were so upset because it wasn't what they had told us on the phone initially and it was very scary because we left him at 130 and everything was fine.

We eventually walked back to his bed and there was about 8 people around him working on him. We saw him on the SiPAP but he was not responding very well, so they were preparing him for the respirator.

We stood around and listened to doctors in a daze and unbelief. Just 8 hours before and for several days in a row he seemed to be doing so well.

We eventually had to leave because it was just too much too soon and the doctors told us they would call us. That 90 minutes until we returned were filled with the most gut wrenching stress we've felt so far. We felt so confused. We didn't want to leave, but we didn't want to stay either.

So leading up to this point Harrison had been showing signs of strength and performing well. Sporadically, throughout the last week he had signs of breathing very quickly to keep his O2 saturation up. But he would pull through and his numbers would return to a normal level. Doctors kept waiting because of his signs of strength and fortitude to do well on his own.

Over time his lack of muscle structure hasn't been able to keep filling his lungs completely. In turn as less of his lungs were being utilized they slowly began to close. As they slowly closed, less of his lung volume was being used even on the CPAP. Consequently he had to breathe faster and faster to keep up with less lung volume. For an extended period of time he was breathing 100 times/min. And his heart rate was screaming over 200/min. They want him to be around 40-60 breaths /min and his heart rate at 160-170. Seeing all that effort he was pouring out doctors thought it best to intubate him and let him rest for several days. He was absolutely exhausted after all this work.

So last night Harrison pretty much said, "Listen, I'm really tired and I need some help." And the doctors gave it to him.

We decided to stay a night in a family room in the hospital to be close to him and check in on him periodically throughout the night.

Almost immediately he was comfortable on the ventilator and very stable. They drew blood labs to find out if the quick retraction had anything to do with an infection and to check his red blood cells. He has no infection but he has become anemic over the last week. Something we suspected from his symptoms over several days. This is very common among pre-mies.

So he has received 2 blood transfusions to increase his red blood cells. That means more cars to move more oxygen on the highway, which in turn means his body will be less stressed to oxygenate. Smoother breathing and slower heart rate. So he is very comfortable today and his color looks great. All his blood labs came back very positive showing signs his body is functioning normally and we can assume his decline was attributed to exhaustion. His blood pressure and heart rate are both very good.

As Harrison rests and recovers from his rough night our hearts are really anxious today. We have limited perspective on this ride and had no idea what this would be like. They told us it would be a few steps forward and a step back, but the way this went down was next to terrifying for us. So we are still really scared and emotionally exhausted today. Doctors have been very encouraging and informative to let us know that to go back on the respirator is very common with babies his size and age. We feel like it is a step backward, but it is really the best possible thing for him as he continues to grow and develop. He will continue to climb the ladder as soon as he gets some much needed rest.

Last night before we went to sleep, I was quoting Psalm 23 over Harrison and us and stillness and peace gave us both some sense of security to help us be able to sleep. But it was restless night. And today as we've received more good news and updates, we still are very wary as we enter the hospital each time.

Pray peace over our hearts and that Christ would be our shield as we walk into the NICU.

Pray for good counsel and informative relationships that will help us have appropriate expectations as we continue on this journey.

Pray for our marriage as we lean on each other and encourage each other to think about what is true, and not about the "what if's".

Pray for a tenderness toward the Lord and a steadfastness on his promises.

Pray for Harrison to recover and his body to be rejuvenated and strengthened as he takes a break from so much work he has been doing.

Pray Christ would protect his little body and fight for Harrison and with him as he recovers.

Pray there would be no long-term consequences to the quick nature of last night's events.

We love you, and are so grateful for your encouragement and prayers.

josh

In Mom's own words...

Well it's been almost 4 weeks so I guess I should finally do a blogpost of my own. I'm so thankful to Josh for taking over the blog and keeping you all up to date on how we're doing in Denver. To be honest, I haven't felt like blogging. It's been very hard to know where to begin- what would I even share? To say that this has been the most overwhelming and emotional time in my life would be an understatement. Our nurses in the NICU have told us repeatedly that this journey will feel like a roller coaster. Days filled with joy, days that are difficult, and most days you don't know what kind of day to expect it will be! Well they are definitely right, that has been my experience for sure.

This coming Saturday was supposed to be my first baby shower. I would've been headed to Charlotte with my big belly to celebrate with family and friends. For some reason the "what-ifs" have been hitting a little more in the past few days. The "how it was supposed to be" has been on my mind more. And with that has brought some grieving, to be honest. I'm sad that I'm not pregnant anymore. I'm sad I'm not at home celebrating the joy of mommyhood with my family and friends. Not to knock Denver, but I'm sad I'm living here! And most of all, I'm sad I only see my sweet baby boy at short intervals during the day and then go home without him each night.

It's hard to capture the gamut of emotions I have felt this past 3 and a half weeks. The joy of seeing Harrison for the first time (even though I was heavily medicated and unrecognizably swollen from my surgery!) The agony of seeing him in his incubator for the first time and not knowing if he was going to be ok. The joy of seeing him open his eyes, look at me and stretch out his hands towards me (what a precious moment, I will never forget it!) But the heartache of seeing him stretching towards me and me having to look through a plastic incubator unable to pick him up. The joy of eventually getting to hold him and read books to him and sing to him. The sadness of that happening in a hospital rather than his little nursery at home. The encouragement of getting literally hundreds of cards and emails from all of you, all over the country. That has blessed us so much and caused me to cry many tears of joy (nice to be crying for a different reason at least!). Wrestling through moments of anger and confusion with the Lord (let's just be real!), but also having moments of experiencing His presence so closely and sweetly. So suffice it to say, this journey has in fact been quite a roller coaster.

In these recent days of thinking about how things were "supposed" to be, the Lord has reminded me that although I don't understand why the story is written like it is, this is how things are supposed to be. This has not taken the Lord by surprise, although it did surprise us. And that has begun to bring me comfort in the midst of this trial. Please continue to pray that Josh and I can rest in the fact that Jesus knows exactly what we are walking through, it doesn't take him by surprise, and he is walking right there with us, holding us by our right hand (Isaiah 41:13, a verse I have kept coming back to).

And please continue to pray for our sweet Harrison. Keep praying for his lungs to develop strong. He is on the CPAP and they have turned it up to a higher pressure to help him out more, so he doesn't have to work so hard. Pray he tolerates the CPAP well, as he has been doing so far. Pray for his lungs to expand and for breathing to become easier for him. And pray he keeps gaining weight quickly! One of our fav nurses, Al, said once babies reach 1 kilo (1000 grams) they often have a little growth spurt and their breathing begins to be easier. Well Harrison is at 950 grams right now, so pray he reaches this milestone soon.

We can't thank you enough for your prayers for us and our son! And with that, I return the blog to the care of Josh...

August 22 Update

Little man is still cruising. He kinda hit a stride all last week and we didn't really have a bad day until Friday. All week he rotated between the cannula and the CPAP in an attempt to help his nose heal from the rubbing of the mask. Friday night he was really lethargic again, but this time there was no apparent reason. He wouldn't even hold his mouth closed, which was weird to us while we held him. And his O2 saturation was running consistently low. So we we were concerned that night. Nursed determined that he was tired from being on the cannula most of the week. He does okay on the cannula, but he doesn't need to work that hard, and we believe it wore him out.

So they made a decision to keep him on the CPAP constantly over the weekend. He has been holding strong since then and doing well.

The air Harrison is breathing is a little over 30% O2. We breathe 21% O2. So he is pretty close. Doctors want him under 30% and even though he did so well on the cannula last week, they haven't been able to consistently get him under 30% without his saturation going to low. So yesterday they ordered a X-ray to check out his lungs. They found that there are very small portions of his lungs that haven't opened up as much as they would like. His lung volume hasn't maximized which is okay and normal for someone as young as him he just needs some help. His lungs came out of the womb kinda rigid like brand new balloons. And it will take some time for them to stretch and become more pliable as he uses them. But he lacks the muscles to do so well. The CPAP is more helpful for developing his lung volume because of the constant pressure. They turned up the pressure a bit when they discovered this about his lungs hoping to help them develop.

Saturday night I (Josh) actually got the chance to attend the Denver Broncos preseason game vs. the Buffalo Bills. The Ronald McDonald House provided tickets for many of us staying at the house. Anyway that night we couldn't go at 8pm so we went at 12 midnight. We learned then that Little Man broke through the 2lb threshold. That was an exciting milestone! He weighed 930 grams tonight. We are hoping to break the Kilogram mark by the weekend. Tonight they bumped his feeds up again from 11ml to 13 ml/2 hrs.

A few things you can pray for:

-That he continues to eat and gain weight. 1 Kilo by the weekend.

-That his lungs begin to stretch and develop over the next few days.

-That his red blood cell development continues to be okay. He gets a Blood lab Wednesday night to monitor this.

-That he tolerates the CPAP well and over an appropriate amount of time graduates to a O2 Cannula for good.

Thank you so much for all your prayers and love.

Denver Botanical Gardens

Some friends out in Denver that we just met through church gave us some free passes to the Denver Botanical Gardens. Friday morning we enjoyed this with Josh's parents. It was so refreshing to get out and walk around and enjoy beauty, stillness and a quiet, cool morning. Thanks, Phil and Kathleen.

Week 2 and 3 Review

First time working on a binkie while feeding.
























My first t-shirt.























17 day-old foot and hand prints.

























Little hand.























Little hand.

My first bath.



















Little foot.























Story time with mom. Dad looks pretty intrigued.

























Close-up of the CPAP mask.

Contrast the CPAP with the O2 cannula.

Beautiful wife and baby.
























Our favorite card we've received.

During Care Time.






















After Care Time.


























First time he opened both eyes, day 12.

The long hallway to the NICU. We find ourself praying every time.


















Certificate for participating in a lung study.

11 day old foot prints.























His monitor of his vitals.

Green- Heart beats/min

Blue- O2 Saturation %

Yellow- breaths / min

Little Man holding Josh's wedding band.

Harrison's first bath

Harrison's first t-shirt