Quick Update

Hey just a quick note ,I talked to Amy tonight and she said that Hope is up another 1 oz that make 1100 grams or 1lb 7oz and she is doing great!

Piglet

I was bracing myself to hear that Hope hadn't gained any weight yesterday since they were giving her medicine to make her pee. She hadn't peed enough the previous day, so I figured she would pee out any extra fluid and they were going to tell me she was down. But she gained 60 grams yesterday and is up to 2 lbs 6 oz. Praise the Lord! I just talked to the nurse, though, and she thinks her urine output is still not up to par. So they may give her the meds again today. Please pray that her kidneys are working good and that she still gains. I am so excited to hear that she's chunking up.

Way Big

She did it! Our little girl finally broke the 1000 gram mark (she's 1010 to be specific). She can officially be handled without gloves. She gained another 30 grams today. That makes a total of 120 (roughly 4 oz) over the past 5 days. Woo hoo! Do ya think she was wanting to eat or something? She is still swapping back and forth between the cpap and nasal cannula. There's not much other news. At this point she just needs to keep growing and getting stronger. God is good!

As for the rest of the family... we still have a mild cold floating around so we weren't able to visit Hope this weekend. But we did get out for a hike this afternoon, which was really nice. It makes me feel a little guilty to be having fun while Hope is in the hospital, but we do need to take care of the rest of the family too. If only we could be everywhere, doing everything that needs to get done! We are thankful that God is holding our Hope while we can't.

Thanks again to all of you for praying for us.

Quick Update

Hope is doing well. She gained another 20 grams, so she's making progress. Good job, little girl. Mike now has a sore throat, and I'm pretty sure I've had a mild cold, so it looks like we won't be getting in to see her any time soon. I miss my girl! Please Lord, let us get over this quick so we can see her again.

And She's Off!

And growing, that is. Hope gained another 30 grams yesterday, so she's up to 2 lbs 2 oz. Yahoo! They are up to 2.2 ml/hr on her feeds, which the doctor said is about 1/3 of what she needs. She is progressing well. She still has a lot of gas in her tummy, but no one seems to care much anymore. They've decided that's just how she is. She is pooping well, so it looks like things are working. She finally went back on cpap after 34 hours on the nasal cannula. She just got kind of tired. Whether she goes back on the cannula depends on which doctor she has. Today's doctor wants her on it, yesterday's doc preferred that she stay on cpap. Either way, she's doing fine. Thank you, Lord, for this miracle baby!

Daddy's Little Girl

Things are going well with Hope. She has been exclusively on her nasal cannula for about 30 hours now. They said they'll put her back on the cpap if she starts acting tired, but so far she's doing great. She has gained 20 grams over each of the past 2 days, so she's weighing in at 2 lbs 1 oz. The doctor told me today that they would like her to gain between 15 - 30 grams per day, so she's right in that range. They have put her on continuous feeds, which means she is getting a constant drip of breastmilk. She is getting 1.4 ml/hr right now and that will go up to 1.6 ml/hr around 6 am. They will up the rate by 0.2 ml every 8 hours. She is tolerating this well and she's pooping good. Mike got to do kangaroo care with her for the second day in a row. Nurse Mary took a picture of them and put it in a cute little holder that has her age and weight and is titled "Princess Hope".

Correction

I apparently misunderstood the doctor yesterday. They are not giving Hope an extra 1/2 ml every 12 hours. They are increasing her feedings by 1/2 ml every 12 hours. So right now Hope is getting 2.5 mls every 3 hours. At midnight they will start giving her 3 mls every 3 hours and by noon tomorrow she will be getting 3.5 mls every 3 hours. They are trying to work up to full feeds so that they can stop the IV. I asked what would constitute "full feeds" for Hope right now. The nurse said she should be getting 15 mls every 3 hours. So we have a ways to go, but she's getting there. She has some catching up to do. The doctor told me this morning that she should be weighing about 1500 grams at this point and she's only weighing in around 900. C'mon Hope! Let's start packing it on. But she's doing well otherwise and tolerating her nasal cannula well. Mike is going up to see her this evening and will get to do kangaroo care with her. Hopefully he'll get some pictures that we can post.

High Flow Nasal Cannula

Hope is doing well today. She has been pooping well, though there is still a lot of gas in her tummy. To help with this they have started using the high flow nasal cannula. This is that tube that you would picture if you heard that an adult was getting oxygen. It has little prongs that go up in your nose. She is doing really well on it, which is exciting. So hopefully now she won't be swallowing as much air and her tummy won't look so distended. Once that happens they can start upping her feeds some more. They were up to 1ml every 3 hours and now they have upped it again by just a tiny amount. She now gets an extra 1/2 ml every 12 hours. It doesn't sound like much, but at least she's going in the right direction. Thank you, Lord. Please let this baby start gaining some weight.

The sweetest thing

Before I start in about the picture, I'm just going to update on Hope. I talked to her doctor just a little bit ago and she is doing well. Her CO2 levels look better on the, boy I don't have a clue how to spell it but it sounds like sigh pap. This is like the cpap but it actually gives her breaths, if I'm understanding correctly. She also had a big poop during the night, though she is needing glycerin every 12 hours. Her belly is still distended because "she needs to start pooping and farting". Doctor's words. I've never prayed for anyone to fart before, but I guess there's a first time for everything. But overall, things are looking good and she's weighing in at 2 lbs even as of last night.

Now, about the picture. This darling hand-made outfit showed up in the mail from "Carolyn". Is it not the sweetest thing? It is just the right size for Hope, which if you can't tell how big that is, look at my cell phone in the corner of the picture. I've taken it in to the NICU so that everyone there could ooooh and aaaaah about it. I've pretty much showed it off to everyone I talk to. I love it! So Carolyn, thank you! I am so touched that you would make this for my baby girl.

Purple pacifier

Not a whole lot to report again today. Hope's CO2 levels were a little high this morning, so they're doing more breathing treatments with her. But the doctor said it wasn't anything to worry about. Still, she didn't let me do kangaroo care today. She said we'll evaluate every day to see, so hopefully I'll get to hold her tomorrow. They are still just giving her 1 ml of milk every 4 hours. Please pray that they can up that soon and she can start gaining weight. She had gotten up to 2 lbs but then dropped back to 1 lb 12 oz. Tonight she is back up to 1 lb 14 oz. I really am getting anxious for her to start gaining. While I was there at her noon care time, her nurse had me help wipe out her mouth with Q-tips. She was sucking at them, so the nurse went and got her a pacifier. It looks huge on her face, but trust me, it is tiny. I was looking at the 0-3 month pacifiers tonight at the store and they looked huge by comparison. Hope really liked her pacifier.

A boring day

Hi all! I'm happy to report that there's nothing to report. Hope is doing great and just kind of hanging out at this point. She got a new IV and had a blood transfusion, but that was pretty much the excitement for the day. She slept through her IV placement, so Hope didn't even think that was too exciting. She had a little poop on her own (no glycerin) when I was there for her care time, so that's good. And these past 2 days she's had yet another nurse named Mary. This is her 3rd. Maybe God is getting her used to being bossed by Marys. :) Thank you, Lord, for boring. I could really get used to boring.

So my conversation with the doctor was really short today. "Hope is doing beautifully. She's a new girl since her surgery." That's what I like to hear. I also found out that the ultrasound they did of her head yesterday looked good - no bleeding. Thank you, Jesus! It's so nice to have a break from the terrifying reports. Oh, and I found out that they're already upping her feeds to 1 ml every 4 hours. Yay! Please pray that all goes well and they can really take off with feeding her. I am so anxious for her to start chunking up.

While I was there today Hope was expressing opinion. She did not like the nurse shoving the feeding tube down her throat. She was hacking and furrowing her brow something awful. But the nurse prevailed.....or so she thought. She walked off to work with another baby and I sat there holding Hope's hand. I was watching her and she started really working her tongue around. Next thing I know, she'd pushed quite a length of that tubing back out. The nurse just sighed in exasperation and decided to leave it be for the time. I think she might wind up being a little feisty.

Big Yawn

I went to see the Hopester today. She is doing great. All the nurses keep remarking on how well she is doing now. She is off the ventilator and back on cpap already. She is off her blood pressure meds. And she is only getting the tiniest bit of pain meds at this point. The doctor had also said that they weren't going to feed her for several days when I talked to her this morning. But when I got in this afternoon, her nurse, Gloria, told me she was going to give her just a tiny bit. Her gut had started making a little noise, which is apparently a good sign that things are working again. So they are going to just give her 1 ml in 24 hours. Hopefully that goes well and they're able to give her more. This little girl is something else. When I first got there, Gloria was just putting on her cpap. It has these little prongs that go up her nose. Hope was not at all thrilled with the set up and was flailing all over. I had to put on gloves and hold her arms still so that Gloria could get it positioned right. So she's got a little spunk, this one does. I'm so glad. She is still weighing in at 2 lbs and she is now 14 and 3/4" long. She was 12 and 1/4" when she was born, so she's definitely growing. Woo hoo! God is good.

Tough as Nails

Here's a picture of Hope's back after surgery. It actually doesn't look that bad, though the incision is about 1.5 " long. Her nurse, Gloria, told me this morning that no one told Hope she was supposed to have a rough couple of days after surgery. She is doing great. Gloria also told Mike that our little girl is "tough as nails". You go, Hope. The doctor called this afternoon and was very excited about how well she's doing. "She is so happy to have that ductus closed!" Her blood pressure is so much better, her kidneys are doing better, and they think they'll be able to have her off the vent within a couple of days. Everyone seems very happy with how she's looking. Yay! They won't start giving her milk again for at least a couple of days, but hopefully she'll really start to take off when they do. I'm not sure how long it will be before I can hold her again, but I imagine it will be a little while. Everyone will hear about it when it happens, I'm sure. Thanks again for praying our girl through her surgery.

Other good news... we had a nice weekend as a family. It felt almost normal for a change. It was hard to have Mike and the kids leave this afternoon. We just need to remind ourselves it won't be too long before they can come up again.

I called NICU not long ago to check on Hope. She is doing really well. They've already turned her ventilator down twice that I know of. The nurse remarked that her blood pressure is looking really good. She has also been peeing well. And although it's not terribly important at this point, I was really excited to hear that my little girl hit 2 lbs. Hooray! She could pee a lot tonight and be back down tomorrow, but it sounded so nice to say she weighs 2 lbs. Oh, I hope she starts gaining weight now. Thank you, Lord, for a good report!

successful surgery

Thank you all for praying. Hope's surgery went well this morning. They had a little bit of trouble with her blood pressure, but it improved once they put the clips on. And yes, I did say clipS. Her opening was big enough that they used 2 clips. The clips are apparently a little smaller than staples and will stay in her. They expect her to sleep away most of the day because of the pain meds they have her on. I just called to check up on her a few minutes ago and the nurse said she's doing great. Her blood pressure is much improved over what it was last night. They are weening her down on her blood pressure meds. According to the nurse, they are "very pleased". Thank you, Lord.

surgery

I'm still praying that God closes that valve on his own. But if not, Hope has surgery tomorrow morning at 8 am. Please be lifting her up in prayer.

I just got off the phone with the NICU. Hope was put back on the ventilator tonight. She is doing okay. When I found out earlier that this was going to happen, I called Mike really discouraged. "Why would God do this? Why won't he just touch her and make her well? He saved her - why this?" Mike reminded me that no one can understand or guess why God does what he does. We need to trust that he sees more than we do and that he is caring for our Hope. I reread Isaiah 40 again tonight. I know Mike is right. Please just pray for us. I don't even know what to ask you to pray....just pray.

²⁷ Why do you say, O Jacob,
and complain, O Israel,
"My way is hidden from the LORD;
my cause is disregarded by my God"?

²⁸ Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

²⁹ He gives strength to the weary
and increases the power of the weak.

³⁰ Even youths grow tired and weary,
and young men stumble and fall;

³¹ but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

C

I've had better days

Hope is not improving. It has been decided that she will have surgery on Saturday. I asked Dr. Webb, the doctor who's on today, to walk through the risks with me. She said Hope will go back on the ventilator and will have 48 hours where she gets worse before she gets better. But at this point it's looking like she'll wind up back on the ventilator anyways unless she gets some help. I asked how often babies die from the surgery. Dr. Webb has never seen a baby die from this surgery in 20 years. I asked how often the nerve going to the vocal chords gets severed. In 20 years, she has seen that happen twice. I asked her to please tell me that the surgeon has done this lots of times before. She said she's been in Spokane 11 years and he was here awhile before that. She said he's the best and she has the utmost confidence in him. I'm still asking God to close that duct back up. He's better than the best surgeon out there, but I guess we'll see what he decides to do.

I had a doctor's appt this morning because I have a sore along my incision. Turns out it's infected and I need to be on antibiotics. While I was there I asked her to take a look at me because my neck had felt pretty stiff last night and this morning. Turns out I have tonsillitis. I have been having a sore throat for 3 weeks now and went in to quick care last week. I was told it was either allergies or acid reflux. So I've been going in to see Hope. I freaked out. She assured me it was fine and I'm not contagious and the baby is fine. I've called the NICU and they seemed pretty calm about it and assured me Hope is not sick. I've been told to take a nap and call them when I get up. The nurse was going to talk to the doctor and just see what she had to say. Everyone is telling me I'm just exhausted and need to sleep. So I guess I'm going to go take a nap now.

Please keep praying for us.

Two steps forward, 1 step back

Hope had a rough night apparently. Her kidneys aren't functioning that well again. They're giving her another transfusion and they're holding off on feeding her again. That valve is potentially causing all kinds of problems. The doctor from yesterday had me convinced that the surgery is no big deal. The nurses all seem to agree with her. Now the doctor today has me freaked out about the surgery. The nerve running to her vocal chord could be severed - how lovely is that?! She also said it is associated with "significant morbidity". What does that mean?! Please, please pray that the valve will close and this will not be an issue any more. I have been told that she really is not going to round the corner and start improving until this valve closes. Please Lord!

There was no kangaroo care today because the doctor didn't think she was up to it, but I did help with care time. It is really hard to change someone that small who has so many cords all over the place. But at least I am slowly improving about going in the NICU and helping with my daughter.

I did have one nice surprise today. Mike had to come up to Spokane to pick up a part, so I was able to see him for a quick bite to eat. That was nice.

Just thought I'd leave you with a verse that caught my attention this morning.

"But Christ is faithful as a son over God's house. And we are his house, if we hold on to our courage and the hope of which we boast." Hebrews 3:6

It was a good reminder to "hold on to my courage".

Guess what I did today

I got to hold my baby today! And she tolerated it really well - no numbers bouncing all over the place. Today was a test to see how she'd do and she did great. It was quite the production to move her and all her wires over to me and it took 2 nurses. I only held her for 20-30 minutes, but it made my day. I get to go back tomorrow and do it again. I also met with Dr. Lewis (Louis, I don't know) and she told me that her xrays of her lungs and bowels looked really good today. In fact, she said her lungs look "fabulous". However, that valve has opened back up and is causing troubles again. They are going to schedule surgery for sometime next week, it looks like. So in the meantime I'm praying that God closes that thing up for good and the surgery doesn't have to happen. I'll keep you posted.

Other news.... I became an aunt again today. Congratulations to Shannon and Patricia on the birth of Jachin Hope! So exciting! Our little girls are less than 1 month apart.

Thank you, Lord, for a really good day!

little piglet

So our daughter is a good eater. I guess she comes by that honest. :) Although the doctor thought the milk would come right back up, it didn't. So today they're upping her amount to 1 cc every 3 hours. Woo hoo! Her xray of her lungs also looked really good today. She lost her pic line last night, so she was without fluids for several hours. Since her blood count was a little low this morning too they've decided to give her another transfusion. But overall she's doing great. Praise God! This is a nice way to start the week.

They're feeding my baby!

I guess I must have some of my mother in me after all, because it has really been bothering me that they haven't fed my baby for over 3 weeks. I am so excited that they're feeding her now! Yippee! So it's only 1 cc every 6 hours, it's a start. I don't know when they gave her that first dose, but so far so good. And this morning at 6 when I talked to the nurse she said her blood gases weren't that good. She was thinking that valve might be open again. She talked to me for a while about that surgery they do to fix it, and really it doesn't sound that awful. It is done right there in the NICU and it takes about 30-45 minutes. I still don't want her to have it, but I guess it's okay if she needs it. However, when I just talked to this nurse a few minutes ago, she said they'd retested her blood gases and they were much better. Thank you, Jesus! Oh, I so hope we're turning a corner and every day is not a new crisis. I'm ready for some days without drama.

And as for the rest of the family....many of you know that Mike and the kids had come up on Friday evening. When we woke up on Saturday, Andy was running a fever so Mike and the kids headed back to Moscow. Very disappointing for all of us. So far no one else is sick, though. And Andy is seeming better already. Please just pray that God would protect our family from illness and give us wisdom about visiting each other and Hope in the NICU.

Okay, I just got a call from the doctor while I was typing this. She was warning me that Hope might not take to the breastmilk right away. She said she would actually be surprised if it didn't come back up on the first time, and that I shouldn't get discouraged. Nice to know, but I'm still praying it goes well and they can start upping her amounts. She also told me that if I haven't come down with something by Tuesday morning, I should be fine to come to the NICU again. Actually she told me that I could wear a gown and mask and come in anyways, but I think I'd worry too much. So Tuesday I will go see Hope again, assuming I'm not sick. Oh, I just feel so relieved today. Thank you, God, for a break today. I've been needing it. I'm just going to leave you with one of my new favorite verses.

He tends his flock like a shepherd:

He gathers the lambs in his arms

and carries them close to his heart;

he gently leads those that have young.

Isaiah 40:11

PS Thanks to everyone for praying for us this morning.

cpap

She's off the ventilator! Hurray! This means she will be back on the cpap now. She will probably start getting misshapen again, but at least this time I know she'll go back to normal once she's off of it. They also tested her blood again and this time her platelet count was normal. Yippee! Now we just need to ask God to take care of that gas in her tummy so she can start eating. Please Lord, make it better. Let us get to a point where things even out. In Jesus name, amen

PS Jeni, I finally remembered to ask about her head circumference. It is measuring 8.5 in at present. She can't really wear a hat yet because of her cpap, but hopefully before too long. Tell Lily she had a great idea with the Hope sized blanket.

still needs prayer

I talked to Dr. Gretebek this morning. Hope is doing really well with the ventilator. They have it set really low and are going to try to move her back to the cpap this afternoon. Please pray that this goes well. Her bowels have more air in them again this morning, so we're not out of the woods yet. Please pray this resolves and they can start feeding her soon. Her platelet count is also low, so they don't know what that means. It could just be from one of the medicines they've had her on, so they've taken her off of that. It could also be from an infection. It could be that her bone marrow is not functioning well yet. She may need another transfusion this afternoon. Please pray that the doctors have wisdom and that Hope's little body just starts doing everything it needs to do. Thanks so much.

Look at those eyeballs

Just thought I'd post a pic of my baby girl real quick. She has been having her eyes open much more lately. She has been doing really well today. Thank you, Lord, for a day without a crisis!

How I Like To Start My Day

I just got a call from Dr. Barsotti. He said things are looking great. Her bowels are not quite back to normal, but they are looking much, much better. He is going to try to take the tube out of her stomach in a day or so. This is the tube that sucks the air out of her tummy. If she still looks like she's doing okay, he will start feeding her by the end of the weekend. H e said her lungs still look "lousy", but they are really working on weening her off the ventilator. His goal is to have her back to the cpap in a couple of days. He is going to start kangaroo care for us as soon as possible because he thinks that will really help me with my state of mind. This is the first day that they haven't listed off something as a major concern. Yay! In fact, at one point Dr.Barsotti mentioned that "This is how we like things to work. Your daughter must have read the book too, because she's gotten on board and is cooperating." Good girl, Hope! God has been good to us.

Super Duper Pooper! :)

She's pooping! All the time now she's pooping. They did another xray this afternoon and the bowel sugeon came to look at it. It still shows some areas that are dilated and there's still a little stuff in there, but he is confident this was what she needed and it is getting resolved. Thank you, Jesus! I had my checkup this morning and was able to see the doctor that delivered Hope. She asked how Hope was doing and I was able to tell her. The doctors had done an ultrasound of her brain because there could be bleeding. We prayed - no bleeding. They said her kidneys weren't working well. We prayed - her kidneys started working. They said she had an infection. We prayed - she knocked the infection. They said she would probably need surgery to fix her valve. We prayed - the valve closed. They thought she might need surgery on her bowels. We prayed - she got an enema and now she's pooping. The doctor was really smiling as I told her all the ways God has been watching over my little girl. It is pretty amazing as I look back over it all. Oh, and she is doing well also on the steroids. They have turned her vent down again this afternoon. I have spent so much time worrying lately, but really, God has proven over and over and over how he has his hand on my Hope. Thank you, Lord! And thank you, all our praying friends. God definitely listens to his people.

A kinder solution

Well, today Hope's doctor talked with the pediatric cardiologist and the surgeon who was dealing with her bowels. The cardiologist confirmed that the valve was closed. Yay! Before talking with the other surgeon, our doctor was pretty convinced that Hope had a blockage in her bowels that might require surgery. The radiologist thought it might be an infection. But the bowel surgeon (there has to be a better title than that, I just don't know what it is) thinks it is actually some poop that is stuck and just needs to move through. His solution? An enema. I'm so happy that's what she needs instead of surgery. When we went this afternoon the nurse said she had passed a little. The doctor then came in and said we really won't know if it is working until later tonight or tomorrow morning. Please pray this works and we can avoid any other icky solutions. Other news... they decided to start a 5 day course of the bad steroid. I really shouldn't call it that, but those side effects are pretty freaky. The doctor assures me that they are giving her a low dose for a short time period. The side effects of this steroid are most noticeable in babies under 2 weeks old and Hope is 2 and a half weeks. Please pray these work quickly also and she is able to get off the ventilator. Every day it seems like we get these scary reports, but then we go to look at her and she looks so good. Thank you, Lord, for watching over my baby girl. And thanks again to all of you for praying.

Thank you, Lord!

My mom and I just came from visiting Hope at the NICU. We asked the nurse how she'd been today and the nurse said she'd been a real pistol. Her numbers had been all over the place and she had been having a hard time keeping her blood pressure stable. So she'd called the doctor and he'd done an echocardiogram. The echocardiogram showed that her valve was closed! And then her blood pressure got better. Thank you, Lord! Now the nurse said that this valve can open and close and this doesn't necessarily mean that the valve is closed for good. But this is the first time that it has been closed on an echocardiogram and it is a good sign. According to the nurse, her bowels were also looking better. That isn't what the doctor said this morning, so I don't know if something changed later in the day. But we are certainly happy for the good report.

Other good news... I have been really worried about seeing Hope because the kids have been sick and I have had a sore throat. It has been about 2 weeks for the sore throat, so I finally went to an urgent care this morning. I was so scared to go in because I didn't want to hear that I've been sick and exposed the baby to something. The doctor said I was not sick or contagious at all. I had no fever, no strep, no swollen lymph nodes, and my throat didn't even look bad to him. He thinks it is either allergies (pollen counts have been high) or acid reflux. He said I was fine to visit the baby. Thanks again, Lord!

One last bit of news. We took some things in to put in/on Hope's box. One thing we put up was a picture Mary had drawn of me sitting in a chair reading Bible to Hope. The other thing we took in was a plaque I'd bought for Hope after hearing that one of the nurses had been calling my girl "Princess Hope". It says "With a tiara and the right cape I could rule the world." The next thing I want to take in is the verse Zeph. 3:17 written out.

"The Lord your God is with you,

he is mighty to save.

He will take great delight in you,

he will quiet you with his love,

he will rejoice over you with singing."

Thanks for continuing to pray. It works!

needing your prayers

Just got done talking to Hope's nurse. They took an xray of her bowels again tonight and nothing has changed. They are still very concerned about her bowels because of the air in them. The doctor is requesting a surgeon consult in the morning. The nurse is under the impression that this will now take precedence over the valve/lung issue and will need to be addressed first. Please pray tonight that the bowels will clear and she will poop on her own. We know God is capable of this and we're asking that He intervenes. Another concern is that Hope is now not peeing much. Please pray that God resolves this also. She is, however, kicking the infection and is down a little on her ventilator settings. They keep telling us that she seems stable. Thank you, Lord, for these things.

Other news...Mike and the kids went home today. I have not been doing well mentally and emotionally, so my mom has decided to stay up here with me this week. It's going to be really hard to have our family separated for a period of months. Please pray for all of us, including the kids. They're having a hard time too.

Thanks so much for continuing to lift us all up in prayer. It is appreciated more than you know.