32 Weeks: 55 Days of Life

This week has been an emotional rollercoaster as Ryan and I have felt more anxiety than normal. We are grasping for concrete answers and desperately wanting to know they will be ok in the end. This week marks 8 weeks in the NICU for our Mighty Three. The fact that they are miracles and gifts from God keeps us going. It still brings me to my knees every day we have with them. We are lucky, our babies are beating the odds that are stacked against them. God's love is sustaining them and sustains us.

It's easy to post pictures of them smiling and "looking" like babies, but the truth is, they are all three still sick. Our doctors constantly remind us that we are witnessing what would be happening in the womb. These are not newborn babies, but truly 32-week gestational babies. Their actual "newborn clock" or developmental clock will not start until their due date, September 1st. When I see Maggie's eyes open or Max's hand move or Miller's tongue sticking out I forget that this would be happening inside my belly instead of inside their incubator. 

By 34 weeks they would love to have all babies on high flow nasal cannulas or at least bubble CPAP with 2 liters of oxygen. For this to happen the doctors would like to do a second round of DART protocol (steroids for the lungs *more in depth on previous post*). The risk is still developmental delays but the babies have to be on less oxygen support than they are now to be able to feed on a bottle (and to go home). Ryan and I never make a decision lightly with our journey but the decisions become harder it seems the longer we stay back there. We don't want any developmental delays, but also know it's more important for them right now to focus on lung development. 

Maggie

Maggie weighs 2lbs 14oz! It's hard to believe that she has already doubled her birthweight. Yes people, doubled. She is up to 24ml on her feeds and still receiving the extra 8 calories to help with weight gain (they would love to see her above 3lbs). She finally finished her antibiotic from her infection Praise Jesus! After the antibiotic, she went back on the bubble CPAP. She has been tolerating the CPAP so far. She is on 6 liters of oxygen. She also has started to get a paci with my milk on it three times a day to help her with sucking. Today she had more severe bradycardias than normal (when her heart rate drops below 100), hers were around 30-40. All three are still having bradycardias and desats regularly but today hers were low. She is still our alert baby and loves her hands on times.

Max

Max started acting sick several days ago. The nurses completed a urine culture and it came back positive for E-coli again. This is Max's second battle with E-coli and his third infection. They still don't have an immune system so each infection is a major step backward. Because he has gotten E-coli twice now the doctors are ordering a renal ultrasound for tomorrow to make sure there isn't another problem. He did have to be switched to the NIV vent for several days to let him rest but he went back on CPAP today to try again. He will have 7-10 days on antibiotics depending on his CRP scores. Max now weighs 2lb 12oz, the smallest of all three. He is getting 24ml of milk and the extra 8 calories. He is requiring more oxygen than normal, but the doctors feel that it could be due to his infection. 

Miller

Miller made major progress in his lung development this past week. After starting the week off on the NIV/NAVA, he has progressed to the Bubble CPAP. Miller has never really "liked" the vents and has constantly been fighting them. After going onto the more gentle  Bubble CPAP, he seems to be doing better and not fighting as much. Time will tell if our little fighter will continue doing well on the Bubble CPAP. Another praise for Miller this week is that he has become much more aware and alert. Unlike in the past weeks, Miller now has his eyes open during his care times and will actively look around at us. It is great to see him finally wake up and he is even smiling more... well as much as they can smile at 32 weeks! Miller is still our big boy and currently weighs 3 lbs 4 oz. He has also doubled his body weight and was the first baby to hit 3lbs! He is receiving 27ml of milk with the additional 8 calories. 

Abby's Thoughts

Being honest on the blog is hard. It's hard to know what to share or if I do share how I'm truly feeling will I be judged? My best friends and family have always told me that if you want to know the truth about something ask me. I have been known to give hard truth but also strive to walk in The Truth. And with that being said, here is me being raw. Being real.

I am done. Done with trying to hold onto Maggie, Max, and Miller by myself. Lord I confess that I'm still trying to control the situation when it's not my fight. This is your fight. You will fight for them. You WILL fight for them. You WILL FIGHT for them. I give you Maggie. I give you Max. I give you Miller. You will fight for them. You will fight because they are yours. You hold their life in your hands. The hands that heal. When I try and place them in my hands, hands that break and our weak, I pray that you will remind me to place them back in your hands. Hands that protect and heal. Hands that made them. Hands that know exactly what they need. Hands that are far better than mine will ever be. You will fight for them. YOU WILL. 

I confess that as a mom I'm still trying to control a situation I have no control over. I want the doctors to give me a 1-10 scale on their status. (This doesn't exist) I want the doctors to give me a definite answer on, are the babies all going to make it? Will they all three come home? And they can't answer. With my words above, the words "I give you Maggie, Max, and Miller", I know that I am saying "even so come, Lord Jesus come". Meaning I trust God's plan is for good and for His glory NO MATTER the outcome (deep breath). Please remind me of this as the days are getting longer and the bad news is still coming. Please remind me that I surrendered and I surrendered to the one who surrendered all. 

Ryan's Thoughts

Worry. Anxiety. Fear. These are words usually not in my vocabulary and things I don't struggle with all too much. This past week has not been the case. I find myself worried about the future for not only Maggie, Max and Miller, but with finances, work and for us. What will our mighty 3 be like as they get older? Will there be developmental delays? How will we make it on one income for the next year? How am I going to balance work and time at home? Will I be able to start my master's classes like we planned? When will we have time alone together? Everyone of these questions has entered my mind this week. It is hard for me to process these things at times because I am not a natural worrier. But what I am constantly reminded of is Matthew 6:34:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

God has this and I know it. He has a plan for Maggie, Max and Miller. He has a plan for our finances, work and for us. He has seen us through every valley and celebrated every peak. He is with us. All 5 of us and we need not worry. But it is hard to remember that at times. 

Praises

If we shared all the generosity people have shown us this week and the past 8 weeks it would blow your mind. Our nurse said the other day, "God's favor is on your family". She is right, y'all have been AMAZING and God is answering our prayers that He will provide. Just to name some answered prayers: a freezer, meals, massages, diapers, candles, rosemary, gift cards, phone calls, cards, visits, Wool and Flax giving me a shopping "spree", these are just to name a few. People are kind. People are compassionate. Thank you! 

We are jumping for joy to know how far the babies have progressed but please pray specifically for the prayer request below! 

Weight gain for all three

Doctors, nurses, RTS, and PTs making decisions

Whether or not to start the DART protocol again

Max's infection

Max's renal ultrasound

All three lung development and to stay on bubble CPAP

Maggie's bradycardias

Abby and Ryan's anxiety

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God". Phillippians 4:6

-Ryan and Abby