One year adjusted age

Hope is 16 months, or 12 adjusted. Look at her go! She is doing amazingly well. Not only did she start walking today, but she has been getting great news at her dr. appts. Back in October, she saw or heard from most of her different docs. She does not need glasses at this point and does not even need to see the opthalmologist again for 9 months. Her GI doc wanted to know if I wanted to test her gut. I did, so she's moved up to a less broken down formula. She is doing great on it (gaining well, too) so we will be trying whole milk within the week. Woo hoo! We don't see the GI doc again for another 6 months.

Her pulmonologist wasn't quite as enthusiastic. Hope's sleep study showed that, although she is satting much better at night(95% on her tummy), she is still having a significant number of apneas. She sent us to an Ear,Nose, and Throat doc who really didn't find much. He thought that it was probably some reflux and put her back on an acid reducer. Easy enough fix. She will need to repeat the sleep study some time next year. In the meantime, we need to monitor her every time she gets sick. At the moment she has a cold, so we've been back on the monitor at nights. Thankfully she has been doing fine, but we're going to have to be more careful again. I'm thinking we will be kind of house-bound again this winter. It's not going to be as critical this year, but we still need to avoid illness as much as possible. We don't want to wind up back on oxygen.

Hope will be going back up to Sacred Heart in December to have a dye study and ultrasound to see how her kidneys are doing. Hopefully, they will no longer be refluxing and she will be able to get off her daily dose of antibiotics. If it doesn't resolve on its own she will need surgery, but I don't know how soon. We'll have to keep you posted on that one.

We may still find ourselves in the dr. office more than the average family, but Hope is acting like a regular kiddo nowadays. As I'm writing, she is sitting here screaming at Andy and trying to push buttons on the computer. It is a lot of fun to watch her and Andy playing together. She definitely has opinions!

More birthday girl pics

We made it!

Here's some pics of our big birthday girl. She really enjoyed her cake.

Still more

More Shots From Uncle Steve

Uncle Steve was up visiting and got some great shots of the kids. I think my nephew, Noah, took the one of Nate. The kids had great fun playing with their cousins.

Hope is doing really well. She is still a little ways off from crawling, but she's certainly mobile. We keep finding her wedged under the couch. As for the other photos - Grandma is up visiting and she took us out for a picnic lunch at this little church she found out in the country. It was pretty neat and we had a lovely time.

Been awhile

I know it's been awhile, so I'm not sure anyone even reads this anymore. But in case you do, here's the scoop.

Hope is getting mobile. She rolls both ways now and can make her way most of the way across the room. She pushes up on her elbows and reaches for things. She claps her hands. She continues to be very good-natured. She is up to almost 15 lbs.

However, we had a recent scare. Her head size jumped from 5th percentile to almost 50th over a few weeks. We had a head ultrasound to check for hydrocephalus. Thankfully she came back in the normal range and the pediatrician is not worried. She just has a big nugget.

Today was her eye appointment up in Spokane. I have to say that I'm a bit surprised by the outcome. We've known all along that she would probably be one of those little kids with glasses, but I really haven't observed any issues. She responds when you smile at her, whether you're up close or across the room. She tracks objects and turns when she hears sounds. Nevertheless, the doc said she'll probably be needing glasses in the next 3-6 months. Not what we hoped, but not too bad considering some of the other worries we've had along the way.

I'll try to post more current pics soon.

Super Sis!

Gabe decided to make a superhero out of Hope today. I thought she pulled it off pretty nicely. (Notice she even has a utility belt.)

Trip to Sunriver, OR

We made a trip to Sunriver, OR last week with the kids. It was Hope's first trip and it went pretty well. We went to the High Desert Museum, to the observatory, and to Smith Rock State Park. It was a blast being out together, especially under the beautiful blue sky.

happy Easter

Not two days ago I was talking to Mike about how I didn't think Hope was going to be ready to start food this next month. She has an appointment with her GI doc on the 16th of May and we are supposed to start rice cereal the week before. I was thinking that there was no way she'd be up to it. She's just too little and completely uninterested in table food. But tonight we had our Egyptian meal to finish off our unit on ancient Egypt. I was holding her on my lap and looked down to realize that she'd swiped my pita off of my plate. She was gumming it for all she was worth. Then she got handed off to Grandma who decided she was up for trying some of the sugar water from our fruit mixture. Oh my goodness, was she excited about that! She's getting to be such a big girl.

She's done with the RSV, thankfully, as you probably guessed from the pictures with no cannula. She even went all night without oxygen the other night. How exciting is that?! (Of course, she hasn't been able to repeat it, but we'll get there soon.) She continues to be a happy, mellow girl who is so sweet. She even gives kisses now. Well, technically she just licks your face if she can get close enough, but it's still very sweet.

I've been told multiple times now that I need to update the blog, so here goes. Hope has been pretty sick. She came down with something about 3 weeks ago, but it seemed very mild, especially in comparison to Andy and Mary. It took a turn for the worse this past weekend. She started having coughing fits that were so bad they would make her throw up. Her oxygen needs started getting greater and greater. She has been to the pediatrician 3 times and the emergency room once. She has not needed to be hospitalized, but she's certainly scared us. I'm hoping she's over the worst now, but I guess we'll see. Her chest doesn't sound quite so much like a bowl of rice krispies today and she's down from needing 1.5 liters of oxygen during the day to needing 3/4 - 1. (She normally doesn't need anything during the day and is on 1/8 liter at night.) She's weighing in at 11 lbs now, down from her high of 11 lbs 5 oz. There is a bright spot in all this though. Hope rolled over 4 times on Tuesday from her belly to her back. Way to go, sis!

Big Week

For those who haven't heard, Hope got her broviac out on Tuesday. Hooray! Now she can have some tummy time. She can also have a bath. I gave her her first real bath this morning and she liked it. It was long over-due. Then we got all dressed up and took her to church. We went late, sat in the back, and left early, but we went. I'd like to point out the lovely outfit that she wore this morning. Someone from our friends' church, who wishes to remain anonymous, made this for her. Isn't it darling? It made a perfect outfit for her first time at church. Thank you, whoever you are! Lastly, I just wanted to point out the picture of her staring at Nate. Boy is she taken with him! She kept reaching up to touch his face, though of course I didn't capture any of that. She talks to him all the time and I think he's probably her favorite person. It's very cute.

Hope is getting to be quite the big girl. She weighed in at 9 lbs 7 oz on Thursday when the home health nurse came. She is acting so grown up too. She grins at people (especially Nate) a lot. She is also reaching for things more and more. She is lifting her legs a lot more, which she hadn't been wanting to do because of all the trauma to her tummy. Then the other day she had rolled way up on her side, which I was very surprised by. She's still delayed, but it looks like she's making up for lost time now that she's finally home and feeling well.

Appointment Summary

Hope had 3 appointments on Wednesday. She saw her GI doc, the urologist, and the opthamologist.

Hope's GI doc was very pleased with her weight gain. She was up to 8 lbs 12 oz. This was up 7 oz from her discharge weight 5 days earlier. She is doing well on the Elecare, but I was cleared to add in a couple of nursings per day, so I've started that. We will see how she does on this combo. If it works, I'll be very happy and feel like we've reached a good compromise. We go back to see the GI guy on the 28th. If all is well and she is continuing to gain weight, he will have her broviac removed. I'll be so excited to finally be able to give my 7 month old a bath!

Hope's appt with the urologist also went well. She has a grade 2.5 - 3 reflux with one of her kidneys. She has about a 60% chance of outgrowing this. We will continue with the daily low-dose antibiotic for now. She has another ultrasound in 6 months and another dye study in December.

The last appt of the day was to have her eyes checked. The doctor was very pleased with how they looked. She was not worried yet about her propensity to cross her eyes. She said that as long as it was not all the time and she was able to self-correct, she was just going to consider it "baby eyes". Good. She did remark that she didn't think Hope was as near-sighted as most babies. This leads her to believe that she may actually wind up far-sighted as she grows. She again reiterated that Hope will likely be one of those little kids that needs glasses.

We were pretty pleased with how things turned out. And I'm pretty excited that we might not be having as many doctor appts as I had anticipated. Life might even start seeming pretty normal. Keep in mind that "normal" with 5 kids is going to be pretty busy, so don't expect posts to be very frequent anymore. We will try to update periodically, but I'm not finding a lot of time to be on the computer at this point. Thanks for continuing to keep us in your prayers.

Guest Appearance By Spiderman

I know it's supposed to be Hope's blog, but we thought she could share it with her big brother for the night.

Guess what?

trial

Hope is doing really well. She is up to 3.74 kg (8 lbs 4 oz). However, when the surgeon came by yesterday he was concerned because she was still here. He is still not convinced that she doesn't have some sort of allergy to my milk. He was concerned that we are tearing up her bowel and he doesn't want to have to remove any more of it. Long story short, we are now doing a trial of formula. We'll see how she does on it versus my breast milk. This is why we are still in the hospital. It looks like we'll probably be home on Friday now. There is some exciting news though. She went almost an entire 24 hours without her cannula. She even took a nice long nap and didn't need it. (Typically her oxygen saturation drops down into the 80s while she's sleeping. This time it only dropped down to 92%.) The problem was that she didn't eat as much that day, so the doc was wondering if she was just tired from working a little harder at breathing. So she is back on it for the time being, but I know her days with that tube are numbered. Such a big girl!

Sweetheart

I just had to post a picture of the cute little hearts that the night nurse made for Hope. Don't you love it? Now if they just came in pink... And by the way, Hope is now a big 8 pounder. She technically weighs in at 8 lbs 1.8 oz. This makes 3 days in a row that she's gained. We've been told that we will probably get the boot tomorrow. We'll let you know.

2 Days in a Row!

Hope gained another 2 oz today. Woo Hoo! Now maybe we can go for gaining 3 days in a row. She is now 3.62 kg, or 7.98 lbs. Eight lbs, here we come!

Eating again!

Hope's GI doc decided that she was growing and should have her tube pulled up into her tummy today. Then she got to start eating out of a bottle. To start, she got 30 ml every 3 hours. Now that she's shown she can handle that, she gets to go up to 45 ml every 3 hours. Every time her bottle feeds go up, the amount they give her through the tube goes down. I'm not sure exactly when she'll get off the tube, but it shouldn't be too far out. Next week I should be able to start nursing her. We should also be coming home sometime next week. However, it has been decided that Hope will need to get lipids 3 times per week while at home. This means we'll hook her up to her broviak at night and it will run while we're sleeping. Not terribly thrilled about having to mess with this, but we are going to be happy to be out of the hospital. We'll keep you posted on when that will be exactly.

yo-yo

Hhhhhmmm....what can we say about today? We had some real low spots, but it ended well.

I had planned on coming up to stay with Hope for a few days. As I was loading up the car I got a call back from Hope's GI doc.

"Are you at the hospital?"

"No, but I'm on my way."

"How long until you get here?"

"A couple of hours."

"I'll come over and talk to you then."

Great.... he won't even talk to me about it over the phone?! This can't be good. Let's just say it was a very long ride up to Spokane. (Keep in mind that the GI doc had been waiting to hear from the kidney doc about why Hope's potassium periodically drops.) I envisioned all kinds of horrible scenarios. I called Mike and he headed up after getting off of work.

The GI doc showed up and told us that they still don't know what's going on with Hope. Most babies will grow on 110 calories/kg, but Hope is at 135 and still not growing. She had been 3.50 kg (7 lbs 11 oz) for several days. He was not sure if it was an electrolyte problem or something else. He mentioned a very slight chance that it could be a hormone problem. He also told us about another patient he had that had some bizarre genetic disorder. So I was pretty discouraged at this point. Top it off with the fact that the kidney doc can't run any of his tests until her potassium gets low again and they'd just given her potassium. So..... long story short, the GI doc decided to go ahead and progress her on feeds. He's going to go up until she starts to gain or until she starts having diarrhea, which is a sign that she's hit her max. I was feeling like we were going to become permanent residents of the hospital.

Then a wonderful thing happened. The nurse came and weighed her and she was 3.56 kg (7 lbs 13 oz). Yippee! Oh please Lord, let this be the beginning of an upward trend!!