Roscoe has now reached 4lb 3oz and is hanging around 28-30% oxygen. Here he is hanging out in his little baby blanket tent. I'm sure this is a future look at all of the blanket forts we'll make in the family room in years to come!
The nurses also surprised us with a gift that was given to all of the NICU babies from rockinandbobbindesigns.com. It was a preemie new years outfit with an invitation to the "Party at my crib" on the back:
Here's looking forward to a new year of growth, maturity, and blessings that can only come from God himself. When Alisha and I started off 2013 just 12 months ago, we had no idea of the roller-coaster that was in store for us. As you form new years' resolutions and make plans for 2014, just remember the wisdom of Psalm 16:9:
"The mind of a man plans his way, but the Lord directs his steps"
Roscoe has been slowly and steadily progressing over the past few days, which is why the blog has been quiet. Most of what we see of him looks like this:
He is on 28% oxygen and weighs 4lbs 1oz as of yesterday. The nurses said that babies grow when they are sleeping and Roscoe slept more than usual while we were there, so perhaps today he'll be even bigger!
Now the typical routine is that Alisha will get to the hospital in time for Roscoe's 11:30am cares (change diaper, check temperature) and will hold him while he is fed through the tube. The holding session usually lasts 60-90 minutes. At night both of us will go in for his 5:30 cares and repeat the same with me holding him this time. Usually Roscoe is alert enough at the start of his feedings that we'll be able to feed him a little milk from a bottle (between 1-10mL).
Hopefully the next big development will either be that Roscoe gets to move out of his incubator to a "big-boy" crib, or that he's able to move from the oxygen mask to a nasal cannula.
We found out yesterday that Roscoe reached 3lb 15oz, so he's only 1 ounce shy of the 4-pound mark. About 3 days ago they adjusted his feedings to be a high-calorie formula instead of milk, because he wasn't gaining weight fast enough or steadily enough with the normal milk. Once he puts on enough weight, they will move him back to a diet of milk only. Since they adjusted his diet his oxygen requirements have been looking better (he's around 27% now), but his heart rate has gone higher. We asked the nurses but they weren't able to explain a possible cause. The good news is that a recent ultrasound showed that Roscoe's PDA valve has closed and that his pulmonary hypertension has improved (but it's still there).
Time got away from me yesterday and I didn't post the videos of Roscoe in his Christmas outfit, so here they are!
Yesterday Alisha and I had a great day. She bribed our dog (Harper) with a bone in order to get her to sit still for this picture with a big bow that she's rather eat than wear:
We also both opened our presents for each other. I am notoriously difficult to buy for, since any time I feel like I need something I buy it without waiting, and if I don't already have it then I do not need it (perceived need, not actual necessity). This makes it difficult on Alisha when buying me gifts, because she has to discover what I need that I don't already know I need. As I unwrapped the present below, she asked me "What do you think it is?". I made some guesses but didn't come close.
She had already given me one Roscoe this year, and this was her way of giving me Roscoe all over again. What she did was hand-make the form above to represent Roscoe when he was born. The shape is 11.4" long and 1lb 3oz. The top white part is the same circumference as Roscoe's head at birth, and the black part is the same circumference as his chest measurement (underneath his arms). She also stitched his name into the bottom. It was a great present and I was totally surprised and excited to get it!
We went to the hospital to take a picture of Roscoe in his Christmas outfit (sent by his aunt and uncle). To my surprise after we got the outfit on, they asked if I wanted to pick him up without his mask on. I hadn't ever done it before, and unfortunately Alisha was stuck holding the camera so we couldn't get a whole family picture with him like this.
Later today I'll upload some of the videos we took of him getting dressed and held in this outfit. God is wonderful to bless us with such small joys as picking up children and seeing them face-to-face. I believe he places these blessings (and their corresponding hardships) in our path to remind us of how wonderful it will be to one day be in his arms and to see him face-to-face.
Yesterday the doctors told us why they're holding off on moving him to the nasal cannula until he reaches 25% oxygen, which may be a while. They said that Roscoe still has pulmonary hypertension (high blood pressure in his lungs) so they don't want to stress his lungs if they don't have to. The doctor said that if they put him on the nasal cannula too early, it could make his lungs work too hard and cause fluid to build up in them. Fluid in his lungs that would be a setback that would extend his hospital stay beyond where it would have been.
We have been praying that God will bring Roscoe home at the "right time", and he's teaching us that it's not yet the right time. There is a time for everything and we are excited for when the time comes to bring him home.
There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
- Ecclesiastes 3:1-8
Today Alisha and I will be going to visit Roscoe and to thank the nurses and doctors who are working today when everybody else has it off. Here's Roscoe yesterday after we set him down from a holding session. A little bit into the video he gets rid of some stomach air bubbles, which you can see as the milk rushes out of his feeding tube.
and here's the picture that Alisha snapped while we took the video:
He is waving "Merry Christmas" to everyone. Hope you all enjoy the time with your families and loved ones!
Today was Roscoe's due date. Had he gone full term, we would have missed all of the problems and turmoil of these past 3+ months (Alisha entered the hospital on September 17th). However, we also would have missed all of the encouraging messages and getting to see Roscoe grow and develop when most others don't get to see their babies at all. After all, how many people get to have a video record of their baby when she he is just over 1 pound?
Roscoe got some news he didn't like yesterday and this was his reaction:
The news he got was that he'll probably come home in mid- to late-January. The doctors said nothing was certain, but that generally because of his IUGR (small for gestational age) we might estimate 3-4 weeks after his expected delivery date as the time when he'd come home with us. He has been in the NICU for 79 days so far, so if he came home in mid-January that would be a total of ~100 days.
After Alisha and I explained that we'd still come to see Roscoe every day, he calmed down a little and decided to rest.
He is still on the breathing mask (they took it off temporarily for these pictures) and is at 30% oxygen. The doctors put in an order that he shouldn't be moved to the nasal cannula (vapotherm) until he is steadily at 25% oxygen. Our nurse balked at this, because Roscoe has never really been at that level of oxygen and since he frequently gets fussy around feeding time and when the mask bothers him, she doubted whether he'd get there any time soon. The nurse is trying to persuade the doctor to alternate Roscoe between the nasal cannula (for an hour) and his breathing mask (for 5 hours), to see if he's able to maintain. She said that they frequently will swap babies around like that to gradually wean them from one device and onto another.
The baby laundry has started! Thanks to all of the wearable and snuggle-able gifts Roscoe was given through Alisha's baby shower, he now has a closet full of clothing and blankets to keep him warm and looking cute. Alisha has been washing it all to prepare for when he comes home.
Today we have something really special to share. This is a gift that was given to us by Roscoe's favorite artist, just prior to Alisha's baby shower. When Paul pulled us aside at church to give us the gift, we weren't sure what to expect. Then he unrolled this from a tube he was carrying and we were completely blown away.
This is a hand-painted map of Neverland that measures about 3' x 4'! The map is painted on canvas with the edges roughed up to make it look like it's a really old relic. We had to hold the map down with two boards to take this picture, but in the middle of the left edge of the map you can partially see a circle he painted to look like a water stain from an old mug. The stain looks so realistic that I thought he just used an old piece of canvas that already had water damage!
What impressed me almost as much as how cool this map looks, was that Paul took the time to read the entire book of Peter Pan to make sure that he didn't miss anything on the map that wasn't shown in movies. He signed the map in the lower corner with another mug stain with his fingerprint in the middle.
As can be seen in the "Neverland" text above and the mermaid lagoon below, Paul also added glitter to parts of the map to make them sparkle for an extra visual effect (depth/motion) as the light hits them:
He also used glitter in the Fairy Forest, which is Alisha's favorite part of the map. It is coincidentally also about to be attacked by my favorite part of the map, which is Hook's Ship.
To top it all off, he even personalized the map with a location that isn't found in the Peter Pan book (but should be): Roscoe's Roost. This map will get passed down to Roscoe as he grows and has children of his own. We were thinking that his children may see Roscoe's Roost on the map and wonder whether Roscoe has actually been away from Neverland so long that he's allowed himself to grow up. If he's anything like his dad, he probably will never fully grow up.
The map has a ton of detail. The compass on the map even matches with the colors of Roscoe's room. The horizontal, vertical, and diagonal lines you see in the background were also added (yet look like they are just old marks on the canvas) to look like coordinate markers. There are so many little touches that make this gift special to us, but what makes it most special is the love we see behind each of the details.
Thank you Paul for all of the work you put into what has to be the best gift I've ever received. Thank you to God for giving Paul his creative gift and for creating a world with wonder and imagination, a world that can see things which aren't truly there and exist only in the mind's eye.
God's creativity astounds me through works like this. It is one thing to be creative, yet it is a totally grander thing to do as God does and invent the concept of creativity and create something that itself can use that creativity to create. You've noticed some of the details of Paul's creation in this blog post. I encourage you to look at the wonders that God has designed and planted all around us to show us his artistry. Our creator is wonderful and his imagination is vast.
Roscoe made some progress on his ventilator (bubble CPAP) to where he's now at level 4 and maintaining. We spoke with the doctor today and she said that the respiratory expert said Roscoe will need to be at 25% oxygen or below in order to migrate to the nasal cannula. We were disappointed with that news because it means it'll take longer for us to see his face on a regular basis, but we are glad they have a plan and goals are in sight.
Here's a little time I had with Roscoe last night. You can see that for the most part he doesn't do much, which is why the blog has been a little lacking the past few days. Fear not, though, as the post tomorrow will almost certainly bring a smile to everyone's face.
Alisha has been sick for the past few days, but she will get to see him tomorrow. When I came in last night and saw Roscoe looking like this I knew I had to take a video:
In the beginning of the video below Roscoe is a little upset because he's waiting to be fed, but when once the pacifier gets into his mouth he's a happy camper. At that point he started focusing on the mobile that is hanging above his bed.
This morning they lowered his ventilator level from 5 to 4 and he showed great stability. Honestly I have no idea what that number is measuring, other than it's the number on a tube for the bubble CPAP machine. Alisha and I were thinking that Roscoe would need to make it all the way to 0 and be on 21% oxygen before they moved him to the nasal cannula (think: mini retirement home oxygen supply). Thankfully they said the very next step past level 4 is to remove the breathing mask and put him on the nasal cannula.
We still have many unanswered of questions like "When will you try moving him to the nasal cannula?", "Is there any other kind of cannula besides a nasal one?", and "Why do you have numbers 0-3 on the machine if you never use them?", but those will have to wait for another blog post.
I try to post something every day, but some days there isn't much new to talk about. Thankfully Roscoe is maintaining his stability and making slow progress toward the goal of having him home. Unfortunately, Alisha came down with an illness so she won't be able to see him for a day or two as the illness blows over. Last night as I was holding him, I snapped this picture (with my cell phone):
Then when I set him back down in his incubator I took this one. The nurses had put up a little mobile that fit better onto the incubator lid, so he'd have something to look at and keep his mind occupied. The incubator has had the top open for probably 2 weeks straight, since he's now able to better maintain his temperature. Hopefully soon he'll move up to a big boy crib!
Roscoe has continued feeding successfully from a bottle. He takes 5mL from a bottle and an additional 32mL through his feeding tube. Today they plan to increase his bottle feedings to either be more frequent (4x per day) or have more volume (10mL).
A cute side-effect of bottle feeding while he's on breathing support is that usually near the end of his feeding he develops hiccups. The hiccups are very faint, as you'd expect. To hear them, turn up the volume slightly and listen for a squeaking sound each time Roscoe's head jolts.
As long-time followers of this blog may recall, Alisha noticed Roscoe having hiccups before he had been born on the baby heartbeat monitors they had on her belly. Click here to see how Roscoe's hiccups looked back then.
I told Alisha that Roscoe's hiccups remind me of a squirrel with hiccups. What do you think?
I am encouraged because during these hiccups Roscoe's heartbeat stays steady and his oxygen needs don't increase. Since hiccups temporarily disrupt breathing, that's a good sign. This is just one more step that God has brought us to on Roscoe's journey home. His last weigh-in was at 3lb 9oz, so he's making progress!
At Alisha's baby shower on Saturday, they had everyone bring their favorite children's book for Roscoe. Some people brought current childrens' books they enjoyed and some brought copies of books they had when they were children. Here are the books that everyone brought (I think we got pictures of all of them). It was interesting to see the variety of interests that Roscoe will have read to him over the coming years!
(The upper book with a picture of a Christmas bell is "The Polar Express")
My personal favorite from the bunch was the Land of Oz above, just because of the vibrant colors on the vintage book. I couldn't find the printing date, but I believe it's from the 1940's. And yes, I was absolutely judging a book by its cover.
From my own childhood, my favorite book was unquestionably Big Joe's Trailer Truck. My parents said that I memorized the book so well that I would "read" the book to them before I knew how to spell. I knew which words were associated with which pages, so they'd turn the pages and I would say the words from that page. I have my copy stored away, but we couldn't find it in time for the blog post. It's funny to see the book get such good reviews on amazon!
Hop on over to this facebook post and let us know which book is your favorite children's book:
Last night Alisha had her baby shower, which was wonderfully put together and managed by Molly Rowley and Rachelle Gay. They had themed the shower to Peter Pan, which is one of Alisha's favorite fairy tales. While the shower was going on, a bunch of the guys came to my house for playing cards and video games. I am writing this blog post without having been at the party, which is proof that the internet is full of people writing extensive descriptions of things with which they have no personal experience. That reminds me of a quote that someone shared with me last night:
"The problem with internet quotes is that you can't always depend on their accuracy"
- Abraham Lincoln
With that out of the way, it's on to show-and-tell. Alisha (and I) were overwhelmed with the volume and generosity of all the gifts she received. This is how some of them looked at the party, set up in a teepee to go along with the Peter Pan theme.
Every party needs the nice pictures from the start of the party, then embarrassing messy pictures from the end. Well here is what Roscoe's room looked like this morning:
Alisha was so excited about all of the presents that she stayed up until almost 1:00am opening some of them (notice the sitting spot cleared in the middle of the rubble). As a testament to how generous everyone was, Alisha got too tired to stay awake before she finished opening all of the presents. For reference, I have never known Alisha to put off opening of presents, so this was a real feat. She plans to continue her gift opening tonight.
At the party we saw another great work from Roscoe's favorite artist. It was painted on cardboard, but I plan to hang it somewhere in the house or garage. Roscoe will love the contrasts once he gets home.
Molly and Rachelle set up a onesie decorating station where party attendees could decorate a onesie that one day Roscoe will make a mess of. They ended up with a clothesline full of personalized messages to Roscoe (or from Roscoe to his parents or onlookers who happen to read his shirt).
Around the rest of the house were other themed stations, many of them filled with delicate desserts you can see below. By comparison, the guys were eating chili, BBQ chicken, and cheesy bread that some claimed I made with enough cheese to satisfy a 6-year old. I think the women won on class in this area.
The cake pops were made by Creative Cakes by Moriah and they were inserted into holes drilled into a piece of wood. As Alisha told me about this I was impressed by the attention to detail.
Once again, Alisha and I were completely overwhelmed by everyone's generosity and by the huge effort that Molly and Rachelle made to bring this together as a special event for Alisha. As some of you know, we've taken a bible quote a little out of context from 1 Corinthians 3:7 to indicate how God is causing Roscoe's growth. After being encouraged by all that everyone did for us last night, another verse that popped into my head out of proper context: Hebrews 10:25 which says (speaking of the assembly and Jesus' coming return):
"... encourage one another, and all the more as you see the day drawing near"
Thanks to God's blessing in Roscoe's life, we can now definitely see that the day when Roscoe comes home is soon within reach. Encouragement, gifts, and most importantly prayers have been instrumental in our emotional well-being and Roscoe's physical safety and development. Thank you to everyone for supporting us in this journey to bring our son home safely.
