Little Victoria
Your body so small
Your hands and your feet
Mom and Dad love them all
Your heart now so strong
God has repaired and healed
He’s using your life
His glory revealed
We don’t understand
Why your life has been hard
Our hearts break when looking
Your chest is so scarred
We hurt when you hurt
Wish there’s more we could do
But the greatest of all
Is to keep praying for you
We thank God above
That He gave you to us
You’re such a great gift
In the Lord we will trust
We trust in His hand
We trust in His heart
We trust He knows best
Though we may fall apart
So now in surrender
We give you to Him
We open our hands
True worship begins
Little Victoria
May God use your days
To bring more to Him
And show them Your ways
May He do great works
Through all you endure
Our little Victoria
In His hands secure
You’ll understand why I don’t have a picture of Victoria tonight when I explain what our afternoon has held.
Everything seemed great during our visit at 1pm, however, when we saw Victoria at 5pm we knew something was wrong. Her heart rate was nearing 220 and her little chest was working so hard and fast to get breaths. Mark and I were very concerned and voiced this to our nurse. She had been concerned also and let us know that she and the doctor had talked several times during the day. Apparently, Victoria had shown signs of this condition earlier in the day and we had not been there during those episodes. The nurse called the doctor and he immediately came to talk to us.
From Victoria’s x-ray, she still had a partially collapsed right lung. It had not gotten any worse, but had stayed much the same. The doctor also explained that babies with Down’s sometimes have some extra tissue (glottal flap) in their airway that can become swollen after surgery and after having a breathing tube. This could’ve happened in Victoria’s case. So, this possibly being an issue added onto her right lung being partially collapsed … Victoria was just tiring out.
The doctor initially tried to put into place a CPAP, but Victoria was so active that he knew it would be difficult to maintain the CPAP in its position. At that point he approached us about putting in a breathing tube again. We, of course, agreed because we saw the distress that Victoria was in. We left the unit so they could intubate Victoria. After about 20 minutes, the doctor called us back in to see Victoria. She had been paralyzed for the procedure so when we went in to see her, she was lying limp on her little bed. It broke our hearts to have seen Victoria in such distress tonight, but to also see her limp again … our hearts broke at that sight, too.
The doctor assures us that she is stable and says that some babies take a little longer to wean off of a ventilator. In 48 hours they will attempt to remove the breathing tube again. If she has problems with the second extubation, they will bring in an ENT to make sure that her glottal flap isn’t in need of some attention.
This road is turning into a longer road than we expected. However, the doctor assures us that this is not an abnormal turn of events for a baby with Down Syndrome. He explained that her heart looks great, so this is not a heart issue anymore. This is a respiratory issue.
Pray that the Lord gives Victoria’s doctors and nurses amazing wisdom concerning her current condition. Pray for healing for her little body and strength for Mark and me. This afternoon was very emotional for us. We continue to ask the Lord to help us be strong for our little one.
Have you heard the expression, “your eyes are the window to your soul?” Well, today I’d say that little Victoria’s eyes were showing through to her sweet soul. It was the first time in a while that I’ve seen her focus on objects and look more like herself. Her eyes were bright and alert. She looked so cute!! I just kept telling Mark, “She’s so cute!!”
I held Victoria for a while. Normally, the visiting time allowed is 20 minutes. The nurse let us stay for about an hour. I fed Victoria a little bit by a bottle and changed a terribly poopie diaper. I was feeling more like a mom today for sure!
The only bad news today was that via x-ray, the doctor could tell that Victoria’s right lung had partially collapsed. Yes, yesterday her left lung completely collapsed! Her left lung is fine now, but the right lung is still partially collapsed. They are working on getting it back to full capacity today. The doctor tells us that lung issues are not abnormal for a baby after having such a serious surgery. Needless to say, Victoria will not be moving into a room today like we had hoped.
We sure miss our girls at home. I try to talk to Elyssa several times a day. She is so funny. Right when I get on the phone with her, she immediately becomes a tattle-tale. She either tells on herself or on someone else. Today she told me, after attending FBC Tillman’s Corner with my parents, that a girl named Mattie, in her class, hit her. Then, she went on to tell me that at home with my mom, she spit on the floor. So, everyday I have pretty interesting conversations with her.
Natalie just jibber-jabbers. She will listen to me talk but usually doesn’t talk back. My mom will hold the phone up close to her mouth when she is really talking it up so Mark and I can hear her. She talks up a storm although you cannot understand any of what she is saying. We get a kick out of it.
Our time here has been restful, even though the circumstances have been stressful at times. God has given us peace and has helped us sleep when we needed to. We feel confident in whose hands our little girl’s life rests. She is being held gently in the hands of her Father, who loves her very much.
PS – We are staying with a friend for the next few days. Her name is Erin and we are so thankful that she opened her home up to us!
PSS – We made a little video of Victoria this morning so you can see how much more “herself” she seems. She’s a cutie!
We were pleasantly surprised this afternoon at 1pm, when we went to visit Victoria. She no longer had the CPAP on her face and looked like she was getting back to herself. Her saturation was at 100% without the CPAP so we were excited about that. I was able to hold Victoria and rocked her some. She was wide awake with no signs of going to sleep. In fact, we were told that she stayed awake from the time we saw her at 1pm until we went to visit her at 5pm! Finally, at 5pm, she seemed to get drowsy. I rocked her again then and she fell fast asleep. Needless to say…I loved every minute of it!
We were blessed, at 5pm, to have a couple visit us at the hospital. Their names are Seth and Beth Hamby. They are actually friends of Matt and Susanna Cole, a couple from our church. Susanna had told Beth about me and my blog because they just had a baby a few weeks ago with Down’s. Their baby is still in the hospital receiving oxygen, but doesn’t have any heart defects. We had such a great time visiting with them in the hospital that we asked them to dinner. We went to Johnny Rockets at The Summit and had a great time. It was great to meet another couple with a newborn going through a similar situation. It turns out that Beth and I had sung together in Matt & Susanna’s wedding. What a small world! I believe that we will continue to develop a neat friendship with Seth & Beth.
Tonight at 8:30pm, little Victoria was still fast asleep. She looked so peaceful. I didn’t even try to pick her up because I didn’t want to wake her. Mark and I just held her sweet hands and rubbed on them. The nurse told us that she had been doing well. She had been fed a few times this afternoon and has done well eating. They had even fed her several times with a bottle! If she continues to do well, it’s possible that she will be in a room sometime tomorrow afternoon.
We are thankful for how God has watched over us during this time. He has blessed us with so many encouraging moments on this journey. One moment that we happened to get a picture of occurred this afternoon. We saw the most beautiful sunset coming back from Johnny Rocket’s. Mark took a picture. It’s amazing the things God uses to remind you of what wonderful power and creativity He has. If He can make such a marvelous sunset, He can work miracles in our lives. He is a great, great God!
