Week 26 Update: Day 13 of Life
Ryan and I have decided to share more about the past 13 days of life with our Mighty Three (Warning: longer post). We are nervous in sharing (what's too much, what's not enough, should we share this early) but we have decided that we NEED YOU in this journey with us. We are sharing details in hopes your prayers will be more detailed and understand more about the journey ahead.
The past 13 days have felt like 13 years. I knew our chances of being in the NICU were high but I didn't know it would feel like this. It is a rollercoaster. A rollercoaster of emotions we have never experienced before. When each hour is different and you have three babies it can become overwhelming with the amount of news. The news is positive one hour and devasting the next.
We have three sick babies that are hour by hour and day by day. Sharing all the positive changes or setbacks would be too much, so as you read please know there are more praises and issues our babies are dealing with.
Maggie Gail
Our sweet Maggie Gail was born weighing 1lb 5oz. She is the smallest of the three. In the past 13 days, she has gained 3oz! This is a HUGE praise as a lot of her setbacks are due to her size. The doctors have told us that they are "waiting" for her to gain weight. It's problematic because they aren't able to put in some of the lines in her arteries they need because they are too small. She has started receiving breast milk eight times a day and receives 8ml of milk. Right now she is tolerating her feeds through a feeding tube! Maggie is on a breathing machine called an oscillator. This is a machine that is gentle enough for her small body. It's allowing her lungs to grow without having to much pressure on them. Her oxygen levels are what's expected at her age and the doctors believe we will see improvement when she grows and her lungs become stronger. She does receive vitamin A shots to help with lung development three times a week.
Before Maggie was on the oscillator she was on a breathing vent. Because she was on the vent I was able to hold her three times before the vent change. Ryan was able to hold Maggie once. It takes 2-3 nurses and a respiratory therapist to be able to move sweet Maggie so we could hold her. While holding her we have anywhere between 11-17 cords and lines tapped to us.
Miller James
Miller was born weighing 1lb 9oz. He has gained 2oz and now weighs 1lb 11oz! Miller is our active baby! You would think an active baby is what you would want, but at times him being so active causes issues with his care. They give Miller morphine as needed to help calm him down. He is also our poop baby :). He is known to drop a load or two.
Miller is currently on a breathing vent. Miller was on the same breathing vent as Maggie, the oscillator, but "graduated" to the breathing vent. Miller actually was placed on a CPAP vent (in his nose) for seven hours one day but became tired and they put him back on the breathing tube. Miller's lungs are also still in the early development stage, they have started him on vitamin A shots to help grow the air sacs. Miller is also receiving 8ml of breastmilk to help with nutrition and waking up his gut. He receives his feeding over a pump in a tiny feeding tube.
I have been able to hold Miller once. Holding or skin to skin time depends on how their stats are for the day. Since each day is different we are not guareented time to hold or sometimes help with care time.
Maxwell Christopher
Our brave Maxwell was born weighing 1lb 9oz. Max has had a more difficult journey than his brother and sister. As a matter of fact, we just got off the phone with the doctor and she reminded us just how much of a miracle baby he is.
The night after the triplets were born Max experienced what is called pneumothorax. A "pneumo" is when the lung collapses and the air is trapped on the outside preventing the lung from reinflating. The pressure from his lungs collapsing caused him to have hypertension on his heart. The doctors have now ruled out a heart condition, praise! He is so small and this event was so traumatic that it caused a brain bleed. Max has a level 3 brain bleed. (there are four levels) We won't know much about the effects of the brain bleed until later, but it can be anywhere between needing a math tutor to cerebral palsy. This news is hard, but the doctors actually told us to put his brain bleed in the back of our minds because this isn't Max's biggest problem at this time. (CRAZY and hard for us). We received this news early in the morning with a knock on our hospital room door. The doctors and nurses were incredible in saving our son. They quickly identified the problem and got the air out. Max had multiple chest tubes inserted to keep air from reaccumulating outside the lungs. He was put on morphine to help with the pain and was medically paralyzed to keep from fighting with the tube. The doctors gave him multiple medications which resulted in Max gaining almost a pound of fluid. Max's situation has been one of the hardest and scariest we have experienced in our lives.
But our God can move mountains. In the past week, Max has been improving and lost a great deal of fluid. He has gone from 2lbs 5oz to 2lbs 2oz and continues to loose fluid. His vitals have improved and he has even opened his beautiful eyes. Max still has a long road to travel, but we praise God that he is improving and continue to pray that he improves.
Abby's Thoughts
I have never been short of words, but the past 13 days have brought me to my knees in a way that I didn't know existed. One hour is spent crying and the next is spent on my knees begging God to heal and save our babies. Ryan and I have both been saying, "Our relationship with God is forever changed." How I pray, read, and worship has completly shifted in just 13 days. It's crazy to me that a God so big can care so deeply about every detail. I can honestly say I have seen God work miracles. All three of our babies are miracle babies, but Max is truly a gift. We had good family friends here several days ago and they reminded me what I said when I first found out..."I'm not sure how, but I know God is going to be known through this journey." Our God loves us. Some people have asked me if I am angry, honestly no. Each hour is a gift, each day is a blessing, and I am praising God for each one.
Getting used to sleeping with our phones on loud and trying not to hear their alarms in my head when I come home. I sometimes have the feeling that everyone at the hospital knows something about our babies that I don't, I know this is out of fear. Our doctor assures us they won't "protect" us from the news, which is comforting to me.
I'm still unsure of how this journey will play out and how God will make himself fully known, but I am confident that He is protecting them.
Ryan's Thoughts
I have experienced the greatest joy in my life and it's the scariest moment all in a two week period. Welcome to being a parent. God has made our mighty three so brave and strong. Maggie is our sweet little feisty girl. Max is our fighter and a miracle. Miller is our mover and shaker. Each one already has a personality and I am completely obsessed with each one. God has chosen us for this journey and has granted us the strength to endure. It doesn't always feel that way. Each minute is a miracle. So I thank God for this minute and pray for the next one. Eventually, these minutes become hours and hours become days. Every day we get with these kids will be blessed.
Prayers
Pray for Maggie's weight gain
Pray for Maggie's oxygen level and vent
Pray for Maggie's blood pressure
Pray for Max's lung development
Pray for Max's pain
Pray for Max's oxygen levels and vent
Pray for Max's fluid loss
Pray for Miller's lung development
Pray for Miller's boundaries
Pray for Miller's oxygen levels
Keep praying against infection for all three
Praises
All three babies are still with us
All infection cultures are still negative
Maggie and Miller getting skin to skin time with mom
All chest tubes are out for Max
Our staff is AMAZING! They love our babies
All the people praying, providing for us, and the meals THANK YOU
-Ryan and Abby
