Enduring Love

After I had my c-section, I couldn't believe how painful it was. Everything hurt. It hurt to breathe, to walk, to get out bed. But I did all of those things so I could see Will and he would know that his Mommy was there. I did all of those things so that I could spend time Libby and snuggle her in the best way I could even though it hurt to hold her or walk around the yard with her. And I feel the same way again. It hurts to breathe, to walk and to get out of bed. And I am doing all of those things so I can go and see Will and so Libby knows that I am here.

One thing that comforts me right now is that the acute pain from the surgery did eventually fade. Little by little it didn't hurt to laugh or cough or sneeze. I didn't think it would ever go away and even now if I move a certain way or do something too quickly there is a twinge. Of course, there is also a scar.

I think this is how the news of Will's diagnosis will settle in. We are grieving the loss of what we wanted. We are grieving the loss of our picture of normal and perfect. I would never say anything to make myself or anyone else feel better about this process. It is necessary and it hurts more than anything I've ever experienced.

This is a time that we need to feel protected and loved. I am not showing my c-section scar to everyone I talk to about Will's birth. It is still tender and private. That is the same with our grief over Will's diagnosis. We cannot talk about it over and over right now but we know that our friends and family love us and are still praying.

Will is our sweet boy. He is so full of cuddles and makes us laugh already. He is SIX pounds, one ounce. It is hard to believe he's so big!

Our biggest prayer right now is for him to be able to come home. This holding pattern makes everything more difficult. Please pray that he would take 48 hours of his bottles, that he would be able to have the NG tube removed and that he would be able to sustain his feedings after that. In that order, he will be able to come home.

I do not believe God makes mistakes and I do believe He is sovereign.

"The LORD will fulfill his purpose for me;
your love, O LORD, endures forever—
do not abandon the works of your hands." Psalm 138:8

A Post from Nanny

Tonight, it's Grandma Carolyn writing in Lori's place. The last 24 hours have created a plethora of emotions for all of us. Yesterday afternoon they did the ultrasound of Will's brain . It was a very long evening as we waited for results. Around 7 the nurse told us that since the results weren't back yet, we probably wouldn't know anything until morning. That made for a long and emotionally exhausting night. Andrew and Lori were back at the hospital this morning in time for rounds. When the Dr. came in, he explained that the bright spots had not disappeared. They were still there and appear to be surrounded by some cysts. He went back and reviewed Will's birth records and it appears that the damage was suffered during the placental abruption due to lack of oxygen.

The name he gave to Will's condition is PVL and explained that this almost always leads to a diagnosis of Cerebral Palsy by the age of 2. It appears from the location of the damage it will not effect his cognition or mental abilities, nor his upper body. Although he is not sure of the severity he does not believe he'll be in a wheelchair and will be able to walk (not at a normal gait), but probably won't be able to run. He will have some type of mobility issues. Physical therapy will begin while he's still in the hospital and will continue so the muscles don't tighten or atrophy.

As you can imagine, there have been lots of tears and conflicting emotions today. Knowing that "it could be worse" doesn't bring comfort. Andrew and Lori need time to process the information, be together, love Libby and Will, and gather strength for whatever the future holds. Right now, they are really not up to talking about it or going over the details repeatedly with a lot of people. They aren't ready yet to hear all the anecdotal stories about "I have a friend who had a CP child..."

I'm sure you can understand that their greatest need tonight is for your prayers as they take time to be a family and try to stay in the present instead of jumping to what the future might hold.

In the midst of all this, Will is still working on his oral feedings. He has had a few times when he has taken the entire 45 cc by bottle. But it tires him greatly and the next feeding or two he's too tired to eat, so they use the feeding tube. However he gets it, it seems to agree with him and he is swiftly approaching the 6 pound mark! When he was weighed tonight, he was 5 lbs and 15 ounces! I love his double chin and the rolls on his arms. And can I just say, as his "Nanny", I can't get enough of snuggling him and hearing his little baby coo's. He is so absolutely lovable!!

Libby, who has no notion that anything could be wrong in the world, continues to bring laughter and sunshine to all of us. Today we tried out her new sprinkler swimming pool, which she thoroughly enjoyed. Before we were finished, she had led Mommy, Daddy, Papa and Nanny through the fountain with her. I think we were all refreshed by playing together.


So, once again, we want to thank each one of you who reads this blog for your care and concern for Baby Will and his mommy, daddy and sister. Without your love, support and prayers this journey would be so much more difficult. Specifically tonight, please pray for strength and healing for Will's legs and brain. Pray for Andrew and Lori that they sense the comfort and peace that can only come from God, for a spirit of continued unity in their marriage, and the ability to trust in the Lord with all their hearts and not lean to their own understanding.

His Grace is Sufficient

Will did a great job for his first 24 hours of oral feeding. He took a complete bottle at 3 am but at 3 pm he was too tired to even wake up. He's being a "typical" preemie with this behavior as it requires a lot of energy to eat.

We haven't heard anything about his ultrasound. After waiting all day to get the results, the nurse finally told me at 7pm that I should go home because I looked really tired and to come back in the morning so we could talk to Dr. Ahmann, Will's doctor, about the results. The upside of all of the waiting is that my mom and I caught up on lots of thank you notes, etc.

I've whispered a lot of prayers today that only contain the word "Jesus". There's just something about that name. As a friend reminded me, His grace is sufficient minute by minute especially as as we wait to talk to the doctor in the morning.

Andrew and I talked to my grandparents tonight who are celebrating their 60th wedding anniversary. We are so encouraged by their love for each other and faithfulness through all of life's ups and downs. How timely to celebrate such a great example. We want to live long enough lives to celebrate the same milestone.

Thank you for your prayers.

First Bottle

Tonight Will had his first bottle. This is the next step on the road to coming home which may be as early as Monday. He took 20 cc and then was pooped. His nurse (a favorite of mine) said with every feeding he'll get stronger and more efficient and may even get better at nursing. He was so alert during his bottle and we took so many pictures to document this event.
He gazed at Nanny, his nurse Kim and Mommy stealing all of our hearts!


This preemie is now 5 grams short of 5 pounds, 14 ounces!! We may bring home a six-pound baby after all. Even though I know we've prayed about it and asked for others to pray about it, I am amazed by God's answer to those prayers. He's actually fat!

Tomorrow Will has his brain ultrasound. I don't know when we'll hear any results and it may not be until we are home that we know any more information. Today was not an easy day for me because of the ultrasound's looming presence. I was struggling with being honest with myself about the fear I feel. Because the Bible says "Do not be afraid" so often, I felt like feeling fear wasn't okay even though I couldn't get away from it no matter what I prayed. My prayers went something like, "Jesus...(sobbing uncontrollably)..." and then I couldn't say anymore.
I called a long-time family friend and pastor to ask his advice on this. He asked me why I thought the Bible said "Do not be afraid" so often and I said it is because it's an emotion we feel so often. This reminded me of yet another reason why the Bible is so relevant in our daily lives--God knows our humanity and He speaks to it.
Our conversation wasn't one that took away all of my fears but he did remind me to remember what I know is true about God when my heart is full of so many "what ifs". He said to remember that God loves me with an everlasting love, that God can be trusted, and that He doesn't make mistakes. Remembering those truths also helped me not to be consumed by fear even though I still feel it.
If you think about it tomorrow, please pray for Will's ultrasound to be clear. That doesn't mean he will not have any developmental problems, but it will mean his chances for something like cerebral palsy are vastly reduced. Please pray for Andrew and me as we wait for the results. It could be a very long weekend. For Will to come home on Monday, he needs to be eating 45 cc orally every three hours. This seems like a huge feat but he is a little conqueror and we're praying for his success in this. He is still prone to infection so we are keeping that and his weight gain in our prayers. He hasn't had a low heart rate since Tuesday morning and as long as he doesn't have any more, he can come home without a monitor.

Again today, in the middle of my tears, I feel like I was reminded of God's compassion and faithfulness to our family. My friend Leigh, who watched Libby this week; my mother-in-law, who kept Libby a little longer today to give me some time to regroup; my mom, who came over after work to lend a helping hand (just like she does every day); and my neighbor, who stopped us on our walk to give us stuffed shells she'd made, all were reminders to me that God loves me with an everlasting love and He can be trusted.

Ephesians 3:17 "And I pray that Christ will be more and more at home in your hearts, living within you as you trust in Him."

PTL

I am not sure where to start with all of Will's news. But we'll start back at Tuesday.

When I arrived at the hospital, the team was just rounding on Will. It's unusual for them to be so late but I guess there were a lot of decisions to be made about the babies they were seeing. They asked me how I felt about moving Will to a crib and I just took a full 10 seconds to stare and blink. I said it would be okay but I asked if they put some sort of netting over him (sort of joking but sort of hoping). Apparently they took it for a joke, laughed, and said no, they didn't put any netting over babies in cribs. After being so protected in the Isolette, it seemed scary to just plop him in a crib exposed to the world. I guess if I am honest I would be happy to bring the Isolette home and keep him in there until he's 10 pounds!

Anyway, he moved to the crib Tuesday night. He kept his temperature up by himself although with a onesie, shirt and pants, two receiving blankets, a fleece blanket and a hat, I don't think he had much of a chance to be cold. The night nurse was a little overly aggressive in keeping Will warm!
His nursing has gotten better. He took 22 cc on Tuesday afternoon but hasn't had as much success since then. His average is about 12 cc. Because oral feeding is the only issue keeping him in the NICU, he will start getting a bottle tonight at 9pm. If he takes off with a bottle and can eat 45 cc that way, he may be able to come home on Monday. This is both amazing and terrifying. I feel like I've never had an infant at home before and have been wandering around my house trying to decide where to put things.

Also on Tuesday, Will was snuggled by his Thomas grandparents. Andrew's step-mom Lyn and his dad Dave were visiting Will when I came back for his 9pm feeding. It was perfect timing for them to hold him for the first time. As one can imagine, there were tears! Lyn kept saying, "I've waited to so long to hold you. You are so loved." It was so precious! Grandpa Dave oohed and ahhed but he's going to wait until Will is home to really snuggle him.
Will had his circumcision this morning and is doing fine. He just whimpered a little and is resting now. He'll have Tylenol for the rest of the day to keep him comfortable.

Finally, Will's ultrasound will happen on Friday. They are doing it a couple of days early so that if he really takes off with the bottle, he can go home on Monday. As I've said before, this ultrasound is something that is difficult not to fear.

The list for prayers seems to be longer than normal but it all fits nicely into the 25-minute drive back and forth to the hospital. We are praying for Will's ultrasound: that the brightness around the triangles in his brain would be gone, that Andrew and I would not fear but rest in God's perfect peace and that we would get a good report from the doctor about Will's prognosis for development. We are also praying for his oral feeding. Ideally he would be nursing exclusively but he is still very immature and he may have to be on bottles. Either way, our prayer is that he would be able to take enough orally that he would be able to come home on Monday.

As always, we pray for protection from infection (in his bowels) and now after his circumcision. Additionally we are praying for his temperature to remain steady and for his heart rate to be stable. Putting all of the pieces together for temperature maintenance, oral feeding and heart rate stability can be too much for some babies so we are waiting with baited breath this weekend to see that it all comes together. Finally, our prayer for Libby is that she would take to this transition well. Having Will home is going to be a lot of work because of the additional feeding needs he'll have. Please pray that Andrew and I would have the wisdom in taking care of both of our children.

Andrew's mom arrives from Alabama on Monday. We are so thankful she'll be here for the week and are hoping Will gets home while she's here. She worked at Children's Hospital for years when she lived in Ohio and is a pediatric nurse practitioner. We couldn't ask for help with both kids.

Father's Day

Happy Father's Day to Andrew! He was able to spend some snuggle time with Will today before we went to lunch at his parents' house. Will was awake for some of the time but fell asleep before we left. Andrew noticed that Will felt heavier today but it's still a little scary to hold him (he's still 3 pounds lighter than Libby was when she was born). Tonight he is 5 grams shy of 5 lbs, 6 oz. He hasn't had any low heart rates since last night at 3 am and he did great today at 9 am and 3 pm when I was there to nurse him. I do feel like it's clicking for him and have noticed over that last 24 hours that he's a different baby when it's time to eat. That's an answer to the prayers we've been saying for him.

"God made you to take care of His little Will and you're going to do the best job."

How is it that on a day when I am sure that there are many people who could do this better than me, a friend writes this line to me in an email? And now, as I read it over and over, I feel such gratitude that I get to be Will's mom. It's hard to sort out all of my emotions about our present situation. Because there is so much responsibility and procedure just to be with him, because we have quite a few unknowns that give us reasons to fear, I've missed out on the wonder of it all. I've been so thankful that he's alive and growing but being overwhelmed by gratefulness because he was entrusted to us hadn't surfaced until tonight. And I know this will be hard to believe, but I am all welled up about it.
Will's big schedule for this week includes circumcision at midweek and then maybe his ultrasound at the end of the week. His ultrasound is something that is constantly on our minds but unless they find something drastically different (like cysts or an expanded bright area), we won't actually know what the brightness means. He will be followed closely for development over the next two years visiting the pediatric neurologist every six months and having someone come to the house for occupational, physical and speech therapy through that same time period. He could grow out of the brightness as babies' brains can regenerate and heal; he could have serious complications. We are praying that brightness will be gone; his doctors and nurse practitioner have prepared us to see a similar ultrasound because not a lot changes in a month.

We do try to make the choice daily to trust God's plan for Will and our family but it is a choice. If we didn't decide to do that, the days would be long and plagued with fear. Psalm 62:8 says, "Trust in him at all times, O people; pour out your hearts to him, for God is our refuge."And so we do pour out our hearts to Him, asking for refuge against fear and worry and our lack of control. Of course, as I fumble through this choice of trusting Him for what seems like minute-by-minute comfort, I am thankful for so many of you who are praying for our strength and steadfastness. We do feel weary so often but are renewed by the love of Christ shown to us by our friends and family. And by emails that come exactly at the right time.

Two Holds Down, Three To Go

If you see the picture below, you are looking at 5lb, 4oz baby. How is that possible? He's huge! In fact, I am afraid he'll get a complex from all of his nurses discussing how fat he is. But it is pretty adorable to see his chubby cheeks and double chin! I love it! He's also only had one low heart rate since Friday at 8:30am. We're hoping he keeps his streak going but he may start having more as the caffeine works out of his system. It is a seven day process which ends on Monday.

He did a great job nursing today at 12:00pm and 3:00pm. The fact that he nursed two times in a row shows great improvement. He also had some milk in his stomach when the nurse checked him before she gave him his 45cc of milk.Will had his second bath today. I wasn't any more confident this time with a slippery preemie in my hands, but he was noticeably bigger than last week. We had to take out five containers of water so that his ears wouldn't be submerged. He's almost outgrown his Tiny Tub!

Will's big excitement for today and the night before last is that he was held by two grandparents. My mom (Nanny) and my dad (Papa). They were just a little bit happy! If you know my dad, you can appreciate what restraint he showed by not "chewing his cheeks" although he promises to do it in a couple of months! Will can't wait to feel the arms of the rest of his grandparents in the next week or so! I think two holds a week is all I can handle right now though-- it makes me nervous still!

We're so pleased with his weight gain and his successes with nursing. We're still praying for those things and for a clear ultrasound and protection from infection. Next week, he will be circumcised. The good thing is that he'll be in the hospital for the days following the procedure so the nurses will help me with cleaning and taking care of the area.
This week my sweet friend will be here for most of the week to help with Libby. She lives in AZ but she and her husband are spending the summer at her parents' house in OH and she was more than willing to offer some days to help us (when she could be sitting at the pool!). How sweet! And another example of God's provision to us.
Speaking of Libby, We were able to go to the park with her today for a little while and play. I think it does us all a lot of good to laugh, swing and slide! I am seeing more and more similarities between Andrew and her (see picture). Thanks so much for your prayers and support.

2312

It's hard to believe that on May 18th, 30 days ago, I was recovering from Will's c-section and trying to decide what we should name our little Baby Boy Thomas. Thanks to the medication, the gravity of what had taken place hadn't hit me yet. I was so thankful that we were both alive and that the doctors gave only positive reports about our son, his size and vitality, our ability to have more children and the success of a quick delivery. Of course, the fear and anxiety set in during the following days when I saw Will intubated, saw his bruised leg and foot, realized he would be in the NICU for quite a while.

Only after I'd had a chance to shake off some of the haze from all the drama did I remember the Psalm I'd read on the morning Will was born. Mostly I remembered what I wrote about the Psalm. After I read Psalm 18, which is really long and didn't seem to apply to me, I tried to summarize to get the main idea. I wrote, "He is a shield for all those who take refuge in him" and "Opportunity to praise Him and remember His faithfulness." That's all I had time to write before Libby woke up and my labor began. I can't read those lines without crying. I had no idea that minutes after I'd read the Psalm and written those words, I would literally be crying out to Him for refuge and to be a shield for me and for the baby who was coming. In the weeks that have followed, I have had the opportunity to praise Him and remember His faithfulness to me.

The morning after Will was born, Andrew took me to see him at Children's. I was overwhelmed with sadness and with the reality of our baby being hooked up to so many machines. All day I cried. That night, when I was in my room, I just felt like God reminded me of all of the ways He took care of us on Monday: my sister-in-law, my dad, and the doctor's office answering the phone immediately when I called for help; being able to crawl over to the door and let my dad in; the paramedics deciding to take me to the closer hospital instead of the one where my doctor was; my in-laws taking Libby; the rupture happening in the L&D triage instead of the ambulance; the doctors' speed in delivering Will. It felt like He was saying, "I didn't take care of all of these things on Monday just to forget about you on Tuesday, Wednesday, Thursday..." And that's what I've thought about everyday since then. He was and is a refuge and shield. (If you have a chance to read the Psalm, verses 4-6 were much more interesting after the events of the day.)

We've had so many opportunities to praise Him. Our newest celebration is that we now have a FIVE pound baby!! Last night, Andrew and I were in Will's room when his nurse told us he weighed 2278 grams. The five pound mark is 2268 grams. Tonight he was 2312 grams so he's between 5.1 and 5.2. We couldn't be happier! He can sit in a normal car seat! He may grow out of some of his preemie clothes before he gets home!
My time at the hospital was well spent. Will had some great success with breastfeeding so it was worth it. He was great at burping but it's hard to know how to hold him. Fortunately, the nurses are very helpful and showed me the right technique. I am holding his jaw bone-- not strangling him-- and he always lets out a nice burp!

The nurses wanted to take his picture with the big bear that my parents bought for him. (They'd read in one of the NICU pamphlets about getting a stuffed animal and taking pictures every week or so to show how Will grows.) This was the result. I am so proud of his double chin and rolls!
I was thankful to be home with Libby for this afternoon. She wanted to play outside in the puddles and was really dirty. When we came in, I put her feet in the sink to rinse them off and before I knew it, her whole body was in the basin and she was having a great time pouring the water out of the sink! It was hilarious!

Thank you so much for praying for Will. We are grateful for his progress and we are still praying for the brightness around the triangles in his brain to disappear, for protection from infection, for breastfeeding and for weight gain.

Sleepover

Last night and tonight, I am having my first sleepover at Children's Hospital. Will is doing fine and because he's interested in breastfeeding, I am staying here to fit in as many sessions as he's up for. He can realistically only handle one every six hours so I am doing the 12 and 6 o'clock feedings. This process is a roller coaster-- sometimes he does great, sometimes he sleeps. I am trying not to be frustrated but it's hard not to feel like I am doing something wrong. Again, eating should be such a natural process. His nurse said she's seen over and over again how preemies at his age would rather be comfortable than eat. She said one day he'll realize that he's really hungry and he'll never look back. It is amazing how, without me saying anything, the nurses often offer the perfect reassurance, comfort or piece of advice to give me a lift.

I had a lot of anxiety about staying here for 48 hours. It is really hard to leave Libby some days although I am always relieved to see Will. I felt really weird about sleeping at the hospital (although they have amazing accommodations for NICU families. They are little hotel rooms-- without a TV or minibar!). I was worried about being lonely or scared (it sounds stupid now). Anyway, as has been the pattern, our family offered the perfect services at the exactly right time. My mom came to our house and spent the night last night, my sister-in-law is watching Libby today and part of tomorrow. Libby is spending the night and part of the day tomorrow with Grandpa and Grandma Thomas. And, last night during Will's midnight-ish feeding, my sister-in-law, who works in the ER at Children's, came by for a visit since the ER was slow. It was so amazing to see her and be able to laugh and talk. I know she had no idea that it was my first time to spend the night or that I worried about being lonely, but I was so thankful for her kindness and presence. I slept so well for the 5 hours in between feedings and never once felt anxious or scared. I can't help but see it as just another example of God's compassion towards me.

I met Will's new doctor on rounds this morning. This will be his third so far. Because of Will's age, they are expecting more out of him. Since he hadn't had any low heart rates for 24 hours as of Tuesday, they took his pulse ox of his foot. That device kept track of his desaturation. I was really surprised by this since the nurse on Sunday said his desaturations earned him more caffeine and maybe a heart monitor at home. This morning, the doctor said they were going to take him off the caffeine altogether on Thursday or Friday. He said at Will's age, they expect him to grow out of the desats and as long as he isn't having low heart rates, he can come off the caffeine. They'll give him three days and if he starts having low heartrates again, they'll put him back on caffeine.

The only other change they made today was to start adding protein to his milk. I immediately thought of volunteering to eat more meat and eggs if my milk was substandard, but the doctor said that my milk matures as Will does but Will still needs the richer milk that comes earlier-- right after delivery. This gives it that extra protein. I was thankful it wasn't because of my diet (I hate eggs).

We're hoping to get a date for his homecoming soon but I don't see any of the telltale signs of that. He has to move in to a crib and be eating orally much more often than he is now.

Thank you for your prayers. We're still praying for his weight gain (he's between 4.12 and 4.13 as of last night), for the brightness around the triangles in his brain to disappear, for his breathing to be stable and now, for breastfeeding consistently. I'd appreciate prayers for patience through the breastfeeding process. Being so hormonal, it's easy to feel discouraged despite what I know is true about his age and ability. Please pray for Libby while she is away from me... actually, maybe you should pray for me as I am away from her! Andrew is able to take some time off to take care of Libby but work never stops. He's balancing all of these things well but please continue to pray for his peace and time management through all of this.

Thankfulness does not express how we feel towards anyone reading this. You are sharing a part of our lives that would be 100 times more difficult without knowing that we are loved and supported.

One Step Back

Andrew and I were thankful for a little break this weekend while my parents had Libby. We were able to dig out of the piles of paperwork that have been piling up and try to reassemble our house and yard. Consequently, I am just now posting for the last three days of activity.

My favorite part of this weekend was when Libby came to visit Will. She was slightly unhappy when I was holding him until she was able to get in the chair next to me and touch his feet and hands.
Then she laid her head on his tummy... then she thought she could hold him. (Minor heart attack for Mommy)
She even showed off for the nurses by running around and turning in circles. She was very sweet and gentle to her little brother and I was pleasantly surprised by her actions.Will is continuing to gain weight. He's surpassed his birth weight by a pound and is getting close to 5 pounds! Tonight he was at 4 lbs, 12 oz. Another success for him this week was the transfer of milk (17 grams) during breastfeeding. The lactation consultant was very pleased with his ability to suck, swallow, breathe. Then he let out a big (for him) burp when I was patting his back! I was teary eyed, of course. I couldn't help being so proud of this little, teeny baby working so hard to do what is supposed to be natural.
He is still having problems with desaturation which means he's not taking deep enough breaths therefore having reduced amounts of oxygen in his blood. The Vapotherm was a way to help with that as is the caffeine. Since he was taken off the Vapotherm, they tried to reduce his caffeine last week with the goal of weening him completely at 34 weeks. Because of all his de-sats, they decided to increase his caffeine again from 9 ml to 20 ml. Although this is a step back, it's very normal for preemies (especially white boys) and it should help him with breastfeeding. He'll be able to breathe more effectively while eating.

The nurse practitioner said that there is now a possibility for him to go home on caffeine. It's something we would give him in his milk once a day. If he goes home on caffeine, he would also have a heart monitor. He would need to visit the Apnea Clinic at Children's weekly or bi-weekly to monitor his progress.

This is something we'll add to the prayer list. We would love for him to come home free of medication and monitors as well as come home with clean ultrasound of his brain. It looks like we may have our prayers answered for a 5 or 6 lb baby as well!

We've had a huge burden lifted from our shoulders as far as Will's hospital stay. Because my maternity insurance doesn't kick in until June 18th, we weren't sure how much of Will's stay would be covered. Andrew talked to our insurance company today and, other than our deductible, they will cover everything-- even the medication he may have to take at home (apparently caffeine is really expensive).

Thank you for your continued encouragement to our family. We've had neighbors (who we've only known for a few short months) drop by with meals, long-time friends show up on our doorstep with food, and family ever-willing to help us with whatever we need. Even people who live far away continue to show us their love. A friend in Kansas City emailed me this morning with this verse. "When my anxious thoughts multiply within me, Your consolations DELIGHT my soul." Ps. 94:19. What a great reminder that God knows me well enough to know I will have anxious thoughts and He loves me so perfectly at those times. We feel so blessed.

First Bath

I finally made it to rounds this morning. I was two hours early and they didn't get there until noon... which is about an hour and half behind schedule. There were no changes today for Will. He's still growing, incubating, and pooping. Good things for a baby to do. He gained weight again tonight. He's up 69 grams so he's between 4.7 and 4.8.

Warning: I can't resist adding a lot of pictures.

Around 3:00, the nurse suggested that he have a bath since he was stinky. I told her he'd never had a real bath and she was so excited to give him one. It was pretty scary that something so little was now going to be slippery and she wanted me to hold him and bathe him. I was pretty nervous and I asked her so many questions-- she probably thought Libby was never bathed as an infant. It's very different with a preemie. They are so little and floppy. Libby was 8 lbs, 4.5 oz when she was born.

Anyway, once I overcame the fear portion of the bath, I really enjoyed it. It felt normal and fun. He was so cute and the nurses were so helpful. One videotaped and took pictures while the other one stood close by and helped me. Another one just stood by the door to "ooh" and "ahh". After his bath, his nurse bundled him up and he looked like a pea pod. He was so tiny! She said we could bring in clothes for him to wear so that the transition in and out of the Isolette would be easier as he is handled more for his feedings. I wish I would have had a little sleeper to put him in because he was pretty cold after the bath but the blanket and hat helped warm him up. I am finishing washing all of his preemie clothes tonight so I can take them with me in the morning. It will be so weird to see him dressed like a baby!



We are enjoying his successes but we are still praying for the brightness around the triangles in his brain to disappear, for his breathing for become stable, for his weight gain to continue and for his doctors to care for him wisely. Thank you for your continued encouragement and prayers.

Perfect Strength

"And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me." 2 Corinthians 12:9

As our time in the NICU continues, we are starting to feel the strain of this pace. It is unavoidable that we would feel that we are burdens to those who are helping us even though we know they love us and wouldn't trade in the opportunity to walk alongside us in this time. We are also very aware of God's grace in our weakness, tiredness and dependence. I love the idea in this verse that God dwells around us, that He pitches a tent over us and that His strength is surrounding us.

I've spent that last couple of days praying as I drive to the hospital. There are many details of each day that need attention and I am trying to trust in God's care for us instead of worrying about what I am going to make for dinner or who will do this or that. God continues to provide for us-- a friend calling out of the blue to drop off a meal, another friend who will be here for the summer and is eager to help with Libby, a large extended family so invested in us. I am encouraged by the daily reminders that God's compassion is extended to us through those He prompts to extend love to us.
Will lost a gram today so he's basically the same weight as last night. His feed was increased to 40 cc today and breastfeeding was fairly successful at 12:00pm. He was also a little bit more energetic today at his 3:00pm feeding. The doctor is adamant about breastfeeding being an "enjoyable" experience for Will and me. He doesn't want it to be stressful right now so the are no qualifications for how much Will should be eating or how long he can try. I haven't quite gotten the hang of the enjoyable part of the experience but I am sure when he doesn't have so many cords and tubes around him, it will get easier.

Thank you for praying for Will: for the brightness around the triangles in his brain to disappear, for his breathing to stabilize, for his weight gain and for his medical team. He did have lots of poopy diapers today so that is an answer to prayer yesterday.

Libby slept through the night last night. It was a welcome change for us to get a full 6 or 7 hours of uninterrupted sleep.

Andrew and I also appreciate your prayers for us. We are choosing to trust God for Will's health but there are days when the "what ifs" sneak in and steal our peace. It is a choice daily to pray about our hopes for Will and set our minds steadfastly on Him.

The Grass is Growing

When I called the nurse this morning, she was concerned because Will's pulse ox kept dropping even when he wasn't feeding. She said she would talk to the doctors about it at rounds but I decided to leave earlier than normal to be there in case there was a big change like putting his Vapotherm back on. Well, as always happens, they came to Will's room early and I got there a half an hour too late. They didn't make any changes. The doctor's comment was that Will's immature breathing was a product of his prematurity. He still wants him to try breastfeeding and they'll continue to wean him from caffeine. I am thankful they are not concerned and that he's able to continue breastfeeding. He had some success today at the 12:00 pm feeding but was way too tired at 3:00 pm to do anything but snuggle. He gained weight again tonight. He's two grams short of 4 lbs, 5 oz. He has slowed his pooping to once a day and it's something to pray about. His belly is soft and everything else is normal but it's a change from the 4 or 5 dirty diapers he was having. The nurses always say he's catching flies and that he's a "mouth breather" which makes them laugh. I think he looks cute but I do hope he doesn't snore. That could make for some long nights!
Some of you have asked about when he can come home. Although they initially told us he'd be there for 6 weeks, the criteria for coming home is as follows: Will can keep his temperature up on his own; he can suck, swallow, breathe; he can keep his heart rate steady at all times, including breastfeeding. When he can do all of that, he can come home. There is no weight requirement although it'd be nice to bring home a 5 or 6 pound baby!

Thanks for your continued prayers for Will. We continue to pray for the brightness around the triangles in Will's brain to disappear, for his weight gain, for protection from infection and for the people who are caring for him to have wisdom.

Miss Libby was able to go to the zoo for the first time ever this week with my sister-in-law. She was apparently enthralled by the animals although they did have to spend much of the day touring the inside exhibits. She came home with a jellyfish and a seahorse which she's carried around and showed to a lot of people.

She is trying to cut some teeth and it's making the nights very long. If you think about, pray for the pain to lessen in her little mouth and gums.