A view into the life of a family who encountered a different future than expected, but has become all the richer for it.

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Sunday, May 18, 2008

Two Steps Back

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.


Anonymous said...

I heard about this shortly after it happened and my heart broke for you and Mark. We know God is in control, and I, along with sooo many other people, are praying right now. Thank you for the updates, but most importanly for sharing your heart and concerns. I love you both and I am praying for this precious baby girl, Victoria Jayne.

Amy Goff

Anonymous said...

We were at our ABF fellowship when Sue Litton called telling us Victoria Jayne was experiencing respiratory distress. We stopped and had a time of prayer for her and you. Please know how much you and your sweet family are loved. We will continue to fervently pray and interceed for you. It is an honor.
Teresa Persons

Anonymous said...

Oh, how my heart just broke for you guys while reading this. I could not help but think of you guys Sunday morning at our church, Jubilee Baptist in Daphne. Dr. Sharp from New Orleans Seminary spoke on TRUE worship and later our choir performed a musical entitled "You are Holy." What an awesome and powerful message. The overall theme of the morning that even in our times of despair, we can "nail" it to the cross and leave it at the feet of Jesus. We even had an ourward, symbolic time of worship where we were given the opportunity to nail our concerns and cares to crosses set up in our sanctuary. Again, I could not help but think of you guys and how even in your time of despair, your eyes are on Jesus and how precious Victoria Jayne is being used for His glory. Know that Victoria's condition and recovery have been "nailed" to the cross.

Thank you so much for the updates and opening up your heart, even at such a difficult time. Not being at North Mobile any more, this blog lets me know just how to pray for you all on a daily basis.

All of you continue to be in my thoughts and prayers, and Victoria Jayne is lifted up daily in my preschool class.

We love you guys,
Steve and Jackie Parks

Anonymous said...

Hi Heather & Mark, the Lord has a plan. Just remember that He is our strong tower, shelter over us. I am praying for and lifting you all up to our Heavenly Father. I love you guys.


Anonymous said...

I just want to let you know that Daniel and I are also praying for all of you! I've been reading your blog and I am so impressed by the strength and wisdom that God has given you. God is in control of everything and all we have to do is trust Him. I was reading some of the blogs to my sister the other day and she said she was just so amazed at how you were looking at everything that has gone on with Victoria. Just know that God is working through Victoria's life and your little blog in ways you probably don't even know! We love you and are praying for you! Daniel and Julia Owen

Anonymous said...

Dear Heather and Mark,
My name is Melissa Marcantel and I attend church with your sister. I have been reading the updates daily and my heart goes out to ya'll because I know what you are going through. My son, Bryce, was born with a very complex set of heart defects. He had his first surgery when he was 5 days old and went on to have 3 more open heart surgeries and numerous heart caths. After Bryce's surgeries we always had trouble coming off the vent...that was our biggest obstacle after getting through surgery. Words can't begin to describe how you feel as a parent watching your child go through such things. I just wanted to let you know that I have been praying for ya'll and I know where you are at emotionally, but this too shall pass. I know it seems like it last forever while you are going through it, but it will get better and there will be better days ahead. Like ya'll we had a wonderful support system and it sure does make the process alot easier. I will definitely keep ya'll in our prayers and close to my heart.

Sarah Argo said...

Hi Heather and Mark. I am Joy Lockwood's friend that lives in Birmingham. My husband and I are UM grads and I was also a member of North Mobile while at UM. First of all, we are praying for you and have been challenged by the signs of grace we have witnessed through reading your testimonies in your blog. Secondly, I am writing because we are prepared to help in any way possible as you continue your stay in Birmingham. I know Joy told you about the housing options through people in our local church, Riverside Baptist in Helena, and I wanted you guys to know that those were still available for you if needed or desired. We have three small children as well, and when I think about your current situation it puts my day to day challenges into perspective. I know that God will continue to provide you with strength as He has been doing, and I praise Him for that. Please do not hesitate to call us if there is ANYTHING we can do. Meals, laundry...you name it!
Love in Christ,
Sarah Argo

Anonymous said...

Hi Heather, my name is Pat and we live in Saraland, I know what you are going thru. You see I have identical twins that have down syndrome, They are the sweetest, loving most wonderful children God could have ever given anyone. My boys just had their 25th birthday. Just love your special little girl and offer her the world and watch her discover it, it is an awesome privilege to raise a child from God. Always remember God will never put on you more than you can handle, praying for you