Hope does not disappoint

It’s been some time since I gave an actual update on how Hope is doing, and since I know many of you come here just for that purpose, I figured it’s about time.

We have been home for 3.5 weeks! The longest so far!

These pictures were taken just this morning.

She had a minor case of pneumonia in one lung after coming home from Columbia, but was able to stay at home. With antibiotics and lots of coughing, she was able to get over it pretty smoothly.

There have been 3 emergency room visits during that time. 2 just to have her feeding tube put back in after being pulled out, and 1 time because she had a fever.

I had concerns about the fever, even though it was low grade, because as far as we know she has never had one. Never. Not when she had tracheitis. Not when she had pneumonia. So I was understandably concerned. However, it just turned out to be a cold.

She’s finally catching up on her weight. Her last weight check on Thursday was 7 lbs 4 oz! That was a 6 ounce increase from the previous Thursday! The nutritionist was very pleased, so we are sticking with our current feeding plan. It seems to be working. Although, I think much of it can also be contributed to the fact that she has been at home longer with less stress.

She has also grown in length – measuring now at 19 inches, I believe. 2 inches longer than at birth. In proportion to her weight, she actually looks incredibly long. Of course, she probably takes after her 6’4″ daddy in her height. Why not? Both of the other girls do. They will surely surpass me at 5’2″ before I know it. I’m doomed to have all 3 of my children look down on me one day.

Another big answer to prayer – we took her for a renal ultrasound this past Thursday and her hydronephrosis caused by her neurogenic bladder (a lack of bladder control common with Spina Bifida) has downgraded all the way to level 1! What does that mean? Well, when she was just a few weeks old, we began having to do in-and-out cathing for her every 4 hours. At that point, her hydronephrosis was level 4. Over time, she improved enough that we were able to keep spacing apart the cathing until we no longer had to do it at all. She has been wetting diapers normally now for awhile, but this was just confirmation of of her improvement. For all intensive purposes, her kidneys are behaving normally now. This is a huge deal, as bladder control issues almost always accompany Spina Bifida.

This doesn’t mean she will never have any bladder problems in the future, but we can pray that she doesn’t, right? Who says she can’t be the exception to the rule?

The first meeting with Occupational Therapy was last week. She seems to fall at about 2 months old in development which we are quite excited about! She was born 5 weeks early, already putting her a month behind developmentally, but we didn’t know how much her hospital time and all her other medical issues would set her back. Only 1 more month seems like nothing in the grand scheme of things. Easily caught up by 2-3 years of age.

She has started moving her head side to side easily, tolerating her “non-favorite” side better than ever. This is a huge deal, as she has adamantly preferred her left side for the last 3 months. If you put her on her right side, she’s arch her head until she got onto her back where she could turn her head to the left. Her breathing had even become positional to that side before she had the trach. She seemed unable to turn her head to the right at all, but has since proven us wrong. I was thrilled the first morning I saw her do it. It’s things like this that would be so meaningless for most babies, but it’s big stuff to us.

Her ears are one of her favorite playthings these days. This is cute, but worrisome…as they are dangerously close to that tube she so likes to pull out. Hence, she has been condemned to a life of mitten wearing until further notice. Though our “Little Houdini” even finds ways to get those off (she may be at 2 months developmentally in her physical abilities, but I don’t think she’s lacking anything mentally!)

She is able to grab toys if you get them close enough to her hands. Though she doesn’t reach out yet.

The last big thing – she is kicking her little legs like crazy. If you know anything about Spina Bifida, you probably know that many people with it have varying degrees of paralysis or muscle weakness in their legs. Many walk with splints, crutches, braces, walkers or use a wheelchair. She may very well need braces on her ankles (we’ve been told she probably will, especially on her right foot), but she is most certainly NOT paralyzed. We knew this even during pregnancy, but the amount of leg movement she is demonstrating lately is even more encouraging.

We’re still struggling through some of this, and Hope still has a long way to go, but we’ve settled into somewhat of a routine. We have wonderful home nurses helping us out, and we have the strength and hope of our Savior walking us through each and every day.

I caught the hint of a smile 🙂

Please continue to pray for her healing. You can specifically pray for her continued weight gain and growth. Also, we will see the NICU doctor and Peds surgeon again in October to reassess her feeding issues. Their plan is to place a G-tube once she is big enough. This will alleviate the tube in her nose. I do not know whether it would still be placed in her duodenum or if measures would be take to allow her to feed into her stomach again. We shall see.

Rejoice in HOPE, be patient in tribulation, be constant in prayer. ~ Romans 12:12

Through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance;and perseverance, character; and character, HOPE. Now HOPE does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. ~ Romans 5:2-5


2 comments on “Hope does not disappoint

  1. Marissa says:

    Wonderful, wonderful updates. I am SO excited about meeting that sweet little girl!

  2. Oh, beautiful baby!!!
    May God bless and provide for her and for you as you care for her!

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