Pacy Fit

After a good night of sleep and time of snuggling with Libby, Andrew and I headed to the hospital while Libby went to church with my parents. We tried to get there in time for rounds, but since he's graduated to the #2 nursery, we haven't figured out their schedule yet. Dr Fike doesn't write in Will's bedside journal on Sundays (or any of the babies) for whatever reason but there was a note for us today. She said they would increase his feeds tomorrow, that he looked good and that he threw a huge fit during rounds because he lost his pacy. She was very impressed by the temper tantrum and the intensity with which he sucked at his pacy (once it was returned). His nurse said she thought it was the baby in the next room because Will was so loud. I have to say that, as a parent, I've never been proud of Libby for dissolving into tears in public places but I was so happy about all the commotion Will caused this morning.

His tummy was back to normal when I called the nurse last night. He just needed more poopy diapers. Thanks for your prayers about that.
My parents came by last night and Papa held Will's hand for the first time. The morning Will was born, I called my dad to come and take me to the hospital. When he got to our house, the door was locked and I was in too much pain to get up and open it. Eventually, I scooted over to the door and as I did my water broke. When I unlocked the door, my dad came in, scooped up a sobbing Libby, dialed 911, called Andrew, my mom, and rode with me to the hospital. He really was Superman that day and it was very special to see his big hand on Will's tiny one. Libby is doing well in the midst of all of this. We missed a friend's birthday party the weekend before Will was born because I was on bedrest but her mom was sweet enough to drop off Libby's party bag. Inside, we found a ladybug cookie and let Libby eat it. It was so funny-- a welcome reprieve!

We're starting another week tomorrow and have a lot of friends coming in and out of the house. Please pray for a smooth week, for all the needs of driving and watching Libby to be filled and for Will's progress to be steady. The specifics for Will are still the same: protection from infection, fewer episodes of apnea, toleration of his feeds, and no brightness around the triangles in his brain.

Once again, we can't say enough how much we appreciate your encouraging posts, emails and prayers.

Chemical Element

There is a verse in Job that says, "When he has tested me I will come forth as gold." Well, today all I want to be is aluminum.

It's the first day that I've felt like my heart is breaking. This feeling is so different as a mom and I think it hurts a lot more than other heartaches.

If you think about us today, please pray for my little family-- for the ability to love each other abundantly even though we feel like zombies, for the grace to continue at the pace we're going, for the strength to accept whatever news comes our way.

Will is having an okay day. He's having more episodes of apnea which the doctors expect for another week and then he's supposed to grow out of it. His saturation levels are okay but vary at times. He's on room air which means his vapotherm isn't pumping oxygen into his lungs, it's just keeping them inflated.

He moved up to 30 cc yesterday but had about 8 cc left in his belly last night after one of his feeds. They held him for an hour and he digested it and hasn't had anything left in his belly after his feeds. He and I had some kangaroo care time this morning for about three hours during which time his pulse ox kept going down. He was pretty gassy and wiggled a lot every once in a while and when I put him in his Isotherm... I discovered why. He had a HUGE poopy diaper-- nice and yellow. I was so proud! The nurse said that could have a been most of the cause of his trouble when I was holding him.

He was so alert during his assessment and even started rooting! I washed my hands and put my pinky in his mouth-- he'd suck for a couple of times and then have to rest. It was so cute! I am praying that this continues up until he can start breastfeeding.

Please pray for Will's apnea, his heart rate and the brightness around the triangles in his brain. Also, his belly was a teeny bit bigger during that last two assessments so please pray that this is just from retaining some air from the Vapotherm and not a sign of any bowel trouble or infection.
Thank you so much for all of your help and prayers. My grandparents left this morning to go home and I will miss them being here. They were an amazing help-- playing with Libby non-stop, cooking, unloading the dishwasher, folding laundry, driving me and setting out plants in my garden. They wanted to get some flowers that were perennials and would come up every year as a celebration of Will's birth. They are so beautiful! (The flowers and my grandparents!).

Perfect Peace

I woke up this morning with a song/Bible verse going through my mind. "You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You" (Isaiah 26:3). For whatever reason, I haven't been able to get it out of my head. Dr. Fike (Will's doctor) came in to talk to me about his head ultrasound. The ultrasound showed no bleeding which is a huge relief and I am so thankful for all of the prayers that were answered specifically. She said they also look at other areas of the brain, one of which is in the middle of both sides of the brain and is in the shape of a triangle. These triangular areas control mobility and on Will's ultrasound there was some brightness around those areas. She said she was kicking herself for doing the ultrasound in the first place since he didn't qualify for one in the first place. Now that she did it, she is a little worried and said they'll do another ultrasound in 4-6 weeks to see if any cysts have appeared or if the brightness has gone away.

She said she was hesitant to tell me the name of what it "could" be because she didn't want me to go on the Internet and freak myself out. She did say that if a cyst develops or the brightness remains, one issue for him may be that Will slaps his feet harder when he walks than other children would. She also said if there's any questions about his mobility when he goes home, he'll qualify for OT, PT and speech therapy at home.

One milestone which will show a lot about his brain and mobility is his ability to breastfeed. That won't happen until 34 or 35 weeks but it will be a clue as to his abilities.

Please pray for our minds to remain steadfast on the Lord. Pray for Will's brightness around his triangles in his brain. Often the brightness disappears and that would be the specific request for him.

I'll Tell You When to Worry

Today Will and I have had a lot of time for kangaroo care. Because of his Vapotherm, he can't practice breastfeeding so we snuggle instead.

When I got here at 12:30pm, the doctor came to say she'd ordered a head ultrasound for him. A lot of times they do this for preemies but previously she told me he was too big for them to do one. Well, his tone is kind of floppy and she wants to make sure there isn't any blood in his brain. She doesn't think there is but she wants to make sure. She said it wasn't something to worry about and that she'd tell me when to worry. Of course, I worry anyway, but it reminded of the verse in the Bible where, as Christians, we're told when to worry. ^"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4:6-7

The peace of God is an amazing gift and I am praying for that this evening.

Please for Will's head ultrasound. Pray that it would show a perfectly healthy brain (which my mom said is better than the rest of us have!). We won't know the results until tomorrow morning so I'll let you know.

Two Steps Forward...

Our baby is getting so old. He's had his first graduation moving from the Newborn 1 nursery to the Newborn 2 nursery. They considered him sub-intensive care now. We're so proud!

Thanks for your prayers for his weight gain. He had weight gain again last night (that's two days in a row) and he is now almost at 3 lbs 4 oz. He and I were able to do more kangaroo care in the late afternoon yesterday since he was keeping his oxygen saturation up. The nurses and doctor tell me that the kangaroo care is the best thing for his weight gain and his ability to maintain his temperature. It's nice to feel like I can actually do something to help his little body. He is also tolerating 27 cc of breast milk which is still being fortified. I think it is almost an ounce or just over and ounce. He's such a little piggy!

Andrew went to see him this morning before work. They put Will back on his Vapotherm last night around 3am because his oxygen saturation kept decreasing. His nurse said he's on 23% oxygen for now. We're always thankful for the wisdom of his doctors even though we feel like it's a step backwards for him. His little body had a lot to keep track of and this will help keep his lungs open and make it easier for him to take deep breaths.

Please pray for saturation levels to increase and stay consistent so he can come off of the Vapotherm. Also, please pray that I would be able to get more sleep. I am having a hard time settling down because my mind goes a million miles a minute. I know sleep is the best thing for me now because when Will gets home I will be nursing him every three hours and taking care of Libby... and I think I am tired now!

A friend who has been through this before said to delight in Libby when I come home from seeing Will. It was such good advice and Libby is delightful. She makes me laugh as I watch her move around the house. I can't imagine what is going on her little mind! I am so thankful for her.

We can't express how much we value your prayers. I know that we make it through each day because someone somewhere is lifting us up in prayer and it gives us strength when we don't feel like we have it on our own. I also appreciate the emails of encouragement you all send. Even though I've written back to very few of them, I read (and cry) through them all.

I'll update again this afternoon after we talk to the doctor.

Mountain Dew

Will is showing off for his doctor today. During rounds he started dropping his heart rate AND his saturation levels. His oxygen saturation is usually at 95-97 out of 100 but it's been going down to 70 or 65 today. This is "normal" for preemies, especially white boys, who are considered wimpy as compared to all other races and girls. His apnea will worsen until 2 weeks of age and then he is supposed to grow out of it. Until then, they've put him on a regular dose of caffeine. He'll get some with his meal once a day. This reminds me of my own cure for an ear infection when I was 4 or 5. My great aunt asked me what I thought would make me feel better and I said, "Mountain Dew." Apparently I was a brilliant neonatologist back then.

While I've been here, he's had two episodes of this low sat-ing (sp?) and once they had to give him oxygen. Even though I know this is exactly what they expect and told me to expect, it's still not easy see.

Please pray for his oxygen saturation to increase and level out.

The doctor was very positive about every thing else and Will no longer has to sleep on the blue bili blanket. He looks so cozy and warm all snuggled in. I am thankful to know that even though I can't hold him very much today, he is being cared for and held by our loving Savior.

A Normal Day

Even though we had the disappointing news last night about Will's weight loss and I was really worried about what Tuesday would bring with Andrew going back to work, this morning we woke up to a "normal" day. Libby slept well through the night and even decided she wanted to snuggle with us in bed this morning. It was a great way to start the day.

When I went to visit Will this morning, both the nurse and the doctor were quick to explain that they weighed Will again this morning because neither of them could believe he lost that much weight. Whether the scale was wrong or all of the prayers for him worked, they said he'd only lost 8 grams instead of 200 and was at 1406 which just over 3 pounds. I was so excited and thankful for the good news.

The doctor also said they would take him off the bili lights tomorrow (which he had scooted off of tonight when we went to see him) and that he was at 24 cc and tolerating his feeds. Because I was alone today with him, we got to do a lot of cuddling. I sat with him for 2 hours and we both took naps. It was amazing! My sweet grandpa is driving me back and forth this week while he and Grandma are here with us and, when I went to tell him I was ready to go, the receptionist said he also had a good nap!

Andrew and I went back tonight and his IV was out. That's a huge relief but he might be sad his caving days are over for now. His weight was 1443 which is a huge gain! He is about 3 lbs 3 oz. I held him again tonight for a long time and we both slept again. He's so warm that it's hard to keep my eyes open... and I guess I am a little tired, too!

They are going to run his PKU again tomorrow when they stick him for his bili level because the part of the PKU that measures his adrenal glands came back slightly elevated which happens in almost half of the preemie boys. If he had a problem, his numbers would be in the thousands. His was 150. The doctor wasn't worried at all but wanted me to know about the elevation.

Libby did a great job today with our friends here. She was also able to play with her cousins which always makes her happy. She loves being outside and Great-Grandpa indulges her love of being chased and tickeled when they are in the yard. We've been getting a lot of phone calls and emails which is so amazing to know how much we are loved. I guess Libby has been picking up on how conversations go because the other day she had someone's cell phone to her ear and she said, "Hello...no... bye-bye" and shut the phone.


Our prayer request for tonight is for continued weight gain, protection from infection and normal PKU results tomorrow. Also, a great prayer would be for boredom which the doctor said would come after the IV came out. Nothing big should change for a few weeks since he probably won't be able to nurse until 33 or 34 weeks. For Libby, please pray that she would take good naps for whoever is here and that she would be having so much fun with our friends that she wouldn't miss me. I'm not that much fun anyway since I can't pick her up and hold her so she's happy to go to someone who can. It's a huge blessing that she's so social! Please pray for Andrew's work schedule that he would find a balance between home, hospital and the office. Pray for my continued healing and that my focus would remain of God's faithfulness to us no matter what.

We Like What He's Doing

What a roller coaster we're on!
Andrew and I finally were able to match up our visit to the doctor's rounds this morning. A group of five or six people come in, including a case worker, resident, 3 nurses and the doctor, and talk about Will's progress. The doctor told us not to worry about all the numbers they were throwing around since she would come and talk to us after they finished. Well, of course I still listened in to their conversation and knew what they were talking about. His stats this morning were:

6 easys

1 assist

1 bm

up 1/4 oz

tolerant of 15 cc

IV at 4

So, all of that means he had six episodes of apnea (he stopped breathing) that were easy (he started breathing on his own) to recover from and one time when he needed to be helped. He had another poopy diaper-- a big one according to his nurse who says she is the "magical poopy nurse" since all babies poop for her. (I've never been happier to have a nurse on his rotation!). He'd gained 1/4 of an ounce which is his first weight gain and he was tolerating the teaspoon of breast milk they were giving him every three hours. His IV is at 4 which is down again from 5. The sooner we can get that out, the better!

After they talked about him, the doctor came over to talk to us. She told us about all of his progress and noted that they would increase his feed to 18 cc for the next 7 hours and then go up to 21 cc if his IV came out (which is normal as a lot of the IV just start leaking and come out) to replace the fluid he wouldn't be getting.

She reinforced that we're not out of the woods even though he's making progress. The feeding is an essential part of his progess because preemies are so suceptible to bowel infections from feeding since their bodies are so immature. The best thing for him is to have breast milk and to get his IV out as soon as possible.

We were celebrating his little victory today and then I called in after his 9:00 pm assessment. The nurse said he was down to 1212 grams which is 2 lb 12 oz. He also had two times where she had to assist him to breathe again. Although she was very positive and reassured me that this is normal for preemies, Andrew and I are both disappointed because we thought his weight was on the upswing. The nurses told us from the beginning that we should A) look at his weight weekly and not daily since big poopy diapers (of which he had three today) or sweating (from the bili blanket) can cause them to really fluctuate and B) know that a preemie’s apnea gets worse up until two weeks so he'll have a lot more assists in the coming days when he stops breathing.

So, tonight's prayers are more for Will's parents than for Will. Pray that we would be encouraged by the big picture of his progress and that we would continue to trust God's hand in Will's life and body. For Will, please pray for weight gain and protection from infection.

Tomorrow we start accepting our friends' loving help with Libby. My prayer for her is that she would adjust to different people putting her down for naps. With so many people to impress with all of her newly learned skills, I think she'll tire herself out and nap well but....

Thanks for all the encouraging emails and calls you've sent. We really appreciate it.

Dare to Experirnce the Joy

Will is my little adventure baby although his sister is also something of a daredevil. In Will's first few days of life, he made a memorable entry into the world as a "footling breech" after a ride in an ambulance and an emergency C-section, he's lived under the hot lights as if he's on the beach and now he looks like he is spelunking (sp?) with his IV in his head. I know we will have our hands full!

Today he is stable and actually got to come out of the tanning bed. Auntie Meri and Great-Grammy came to visit as well as Papa, Great-Grandpa and Uncle James. His bili levels are at 5 and although he's still laying on the Wallaby blanket, it's nice to know he's making progress. For all of those who prayed for poopies, our prayers were answered and he had full diaper yesterday. Now we'd like to move on to regular bowel movements.

Last night, Andrew and I were there for his nightly assessment which is at 9:00. I got to change his diaper, take his temp and then lift him as he was weighed. The nurse weighed him three times and finally settled on 3 lbs. 1.5 oz. It is a little discouraging as he is consistently losing weight so the next hurdle is to get him packing on some fat. This morning they increased his feed to 15 cc and then they will also fortify his milk. The nurse said it's like having a milkshake!

This is probably the last picture of me pregnant. It's on Mother's Day morning. Libby's gift to me was this Fuschia tree which she is smelling. It makes me a little sad to see this picture as I was planning to be pregnant for a lot longer and it represents a lot of what our lives are not right now. Although we are so thankful to have little Will alive, it's hard to wrap our minds around this new normal which is so different than what we expected. It's also hard to celebrate the little successes because we never know what's around the next corner. I was reading a little book for parents in the NICU and it said "Dare to experience the joy when your baby has small accomplishments" so that's what we're doing. Then we'll move on to the next task.

If you'd like to pray for Will, pray for weight gain and steady heartrates. If you'd like to pray for us, oh, do we have list! Andrew goes back to work on Tuesday and I know it will hard for all of us. He's waiting until Will comes home to take any extended time off so it's a lot of bouncing in between right now. Please pray that we'd all find a rhythm, that Libby would find a sense of normalcy and that I would continue to seek God's strength in all of this.

Thanks for all of your prayers and support! We ate such a yummy quiche for breakfast this morning that a sweet friend made and it was just another reminder of God's provision to us and his care for us through our friends and family.

Where There's a Will

I'll try to keep this updated with Will's latest info. We are so amazed as we watch God's hand in the details. We are trusting Him for strength through this time in our lives.

Will's working on getting rid of his jaundice. He peaked yesterday with a level of 12 after being at 6. They would like it to be below 1. They'll keep him in there for a few days and will test again in 2 or 3 days to see what his bilirubin level is. The doctor said Will is enjoying time at the beach right now.

He is receiving 9 cc of breast milk every 3 hours. They'd like for him to have a bowel movement so that we know his digestion is working. It would also help bring down his bili levels.

He is breathing pretty well on his own. He's only had one episode where the nurse had to intervene to help him get back on track. If he has 7 or 8 in a 12-hour period, they'll put him back on the Vapotherm which is a tube in his nostrils that helps keep his lungs inflated.

He's going to breast as often as I am there for his feeding time. He was able to latch today but the sucking, swallowing, breathing routine is a little too much for him right now. Mostly they want him to become familiar with the smell. He's like a little kitten and just licks and sniffs. It's so cute (although I won't be posting pictures of that!).

We're taking his situation day by day. Thinking any further ahead and playing with "what ifs" does not help right now. We do know he's projected to come home in 6 weeks from delivery so we're hopeful that stays the same but we want him to stay in the NICU as long as he needs to be cared for there.

We are so thankful for our friends and family who have offered to drive me back and forth to the hospital, take turns watching Libby with me since I can't lift her for 6 weeks, clean, run errands, cook and do yard work. It is very hard to feel so helpless but I am incredibly grateful for loving friends and family who are giving so selflessly and we are humbled by all of this love. He's already had so many visitors!

Two of his grandmas...

Three of his aunties but only two are pictured here...

More than one honorary auntie but we actually were able to coordinate a picture when Kris visited!

If you'd like to pray for Will, pray for his bowel movements! Pray for his breathing regulation and pray that he would be protected from infections (his worst enemy right now).

Andrew is splitting time between work, the hospital and home. Libby is delighting in all the attention! We thought this was hilarious this morning. Nanny doesn't want her to cry too much at night so she brought her in bed with her. Libby is obviously a bed hog!

We'll keep you posted!

Birthdays and Gardens

I have no idea how people keep their blogs updated but I am making some lame attempts. Libby is a walking machine. She loves to explore everything, loves to chased around the house (especially by Daddy) and wants to go outside to see the birds and squirrels every moment of the day. We went to Grandpa Dave's birthday party last weekend and she was entertained by Grandma Lyn who always makes her laugh!
Grandpa Dave took her on some walks down the path to the point and let her get her feet wet in the water. I am not sure who had more fun.

Earlier that day, she helped Mommy and Daddy plant our little garden. Stay tuned to see how those plants do since it's our first time to try this!