Tuesday Update

I'm just hoping I don't repeat myself, because at this point the days are running together:)

Today was the worst day for M so far. When she woke up this morning, I noticed blood in her ear, so I took her to the pediatrician here in the KC. He confirmed she has a pretty nasty ear infection in her left ear DESPITE being on A STRONG ANTIBIOTIC. He prescribed another antibiotic to cover the positive grains because the one she is on should cover all the negative grains...whatever that means. He also looked at her palate and said it is definately infected, rather yuckily (is that a word?). There is yellow goop in her hole in the suture line. The hole has gotten larger. Probably won't repair on its own. They said if she starts running a fever, we need to go to the emergency room for IV antibiotics.

So, off we went to Target for the 2nd time in 2 days. I gave her the antibiotic, which luckily is once a day, and then got some broth soup for her lunch. She ate about 1/3 cup of soup and liked it as long as I shot it into her mouth with a medicine dropper. After that, she got worse. She cried pretty much from 3-9 except for a brief respite for a one hour nap. She is hurting so bad and it is so hard to watch. The new antibiotic should kick in tomorrow, so I'm keeping my fingers crossed.

There is good news. It looks like no new areas have opened up at this point, so if we can get over this infection we might just be looking at a largish fistula that needs to be closed up and not a full-fledged repair job again.

I have to end this post with something that weighs heavy on my heart right now. I am so, so lucky and I know that I am. This is not life threatening. This isn't her last shot at a repair. She shared a room with a little girl who was 5 years old and had been in the hospital for 2 months. She had a heart transplant in December. Yet, she and her parents weren't bitter or depressed. They were hopeful and they tried to be encouraging to us. That is so humbling. Sometimes it is hard to put everything in perspective when your baby is hurting so badly, but I feel it is important that I try.

These past few days I have been ministered to by two songs in particular - the new version of Yours by Steven Curtis Chapman with the verse he wrote after his youngest daughter died at the age of 5, and Held by Natalie Grant. Both of these songs deal with the loss of a child and learning to praise God and how loved they feel in the midst of all that pain. Next to that, this is nothing. M is God's child. God made her this way in his image and he was there with her even when I could not be there. I hear him speak to me so clearly to let go of trying to make M better. I can't do it, but he can and I need to let him. It is so hard to let him be God sometimes. I feel like maybe she is lost in the sea of all of those who need him, but he reminds me she is not and he is holding her and ministering to her as only he can. So, today I kept singing "M is yours Lord, Yours Lord, all of her is yours. From the top of her head to her little tiny toes." I know I'm no Steven Curtis Chapman, but it reminds me of the point:)

Please continue to pray for M. Pray she has peace and comfort and healing. Pray for me that I remember whose child M really is.

From the mouth of babes

This morning my mom was taking S to school and he asked me why I was tired. I told him I had trouble sleeping last night because I was worried about M. He took me by the hand, looked in my eyes, and said, "Mama, you don't have to worry about M. She will be okay during the night." Then he patted my hand.

Sometimes he is so sweet. I love my little man.

Monday Update

Well, after nearly convincing myself that I was totally overreacting, this morning M wanted to eat a banana really bad, but it hurt her mouth so bad she cried. I looked at her mouth and saw more yellow/brown and a hole. I called the surgeon's office and they fit me in right away. He looked and said the repair is coming apart. All is not lost yet, the hole is about 1 inch in diameter and it may end up healing closed anyway. But, it is not what he wants to see. He gave us an antibiotic rinse for M to swish with and spit out 3 times a day. Surprisingly, she is really good with the spitting instead of swallowing.

I am praying that God will hold her palate together. I don't want her to have to go through more surgery. She is so much better off than many of the kids we saw at the hospital. We were in a semi-private room with a girl who was 5 years old and got a heart transplant last December. She nearly went into rejection and had been in the hospital since September. If M's palate breaks down, it's not life-threatening. It's just heartbreaking to see her have to go through all this pain for naught.

Please, please, please keep praying for us. We really need it!

Sunday update

Well, today was not as good. Last night M didn't sleep well at all. She couldn't breathe good through her nose and kept waking herself up coughing and crying. She's slept most of the day today and hasn't really wanted to eat or drink. We've gotten enough in her that she shouldn't get dehydrated, but all in all it has been quite deflating after how well everything was going.

I am a total basket case about everything. I look at her palate repair and see yellowish lines and think it's getting infected, but maybe not. I am overanalyzing everything and generally just stressed and worried. I'm not a big worrier as a rule, so this is driving me crazy.

I know that I should trust God and that he will take care of her no matter the outcome and that he can hold her palate together, but I just can't seem to let go of the worry. I need the doctor to look in her mouth every morning and say that everything looks good or that it looks like the palate is breaking down. I thought I would do better this time, but I'm not. Looks like it will be a long 3 weeks.

Pray for M that she is more like herself again tomorrow and that she has a better night tonight. Pray for me that I can stop worrying so much:)

Update

Just a quick update. M is out of the hospital as of yesterday. This is the quickest and best she has ever done in 3 palate surgeries. The surgeon went out of his way to try everything possible to make this one take. They did not do morphine this time, per our wishes, and I think it made all the difference. M was not agitated this time at all. She did awesome.

Please continue praying that her palate will hold together this time. The surgeon said if this doesn't hold he's not sure what we'll do next.

Big day

Tomorrow, the 13th, is a big day around these parts. M is turning 3 and to celebrate, she's having a palate revision:) Just kidding on the celebrating part. Her palate is still open to the point that she still can't make most of her sounds. With the move came a change to a new doctor - in St. Louis. We finally were able to schedule the surgery and the only time we could do it before December was on her birthday. Hopefully, she'll forgive me:)

So, tonight we have checked in at the Haven House in St. Louis and early tomorrow morning we go to the hospital for M's surgery. K and S have school, so they stayed behind in the KC with Granny. Pray for M tomorrow that she will be peaceful. She gets really anxious and fretful around doctors and hospitals.

I will update later in the week - hopefully with pictures:)

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