A Necessary Evil: Going Back to the NICU

So I'm just going to get straight to it.

We're heading back to the NICU late next week. Sadie Ann is going to have laser eye surgery. 


Sadie Ann saw her retina eye specialist yesterday for her weekly eye exam yesterday. The previous week her doctor mentioned that surgery could be a possibility; this week the possibility turned into a certainty.

Her eyes are continuing to do well following the Avastin injections she received back in February. There hasn't been any signs of the ROP returning - which is great! However, the concern is that the injections cause the vessels to grow significantly slower than what they should (which is expected) and at her particular gestational age (which is late 40's) those vessels should have grown into stage three of the eyes and hers are still in stage two.

The injections are a fairly new intervention, but what the retina specialists who give the injections across the south-east have seen is that those babies who are around 50-weeks gestation and whose blood vessels are still in stage two of the eye later redevelop the ROP when they get to 60, 70, or 80 weeks gestation. At that time, the ROP moves quickly. There's a risk of significant vision loss if not immediately identified and treated. And typically around that time babies are too big to perform surgery in the NICU and too small to be in an actual OR, so they have to go to a different facility in a different city. Doing the procedure now is more-so preventative - and permanent. It eleminates the fear of ROP coming back.

Following surgery, there will no longer be a need for weekly retina exams - which, honestly, will be a relief. Each week that passes gets harder and harder for her eye exams. She screams louder. She fights stronger. And this mama is in the corner of the tiny room trying to block out those harsh screams for help. It's tough. I don't like it. It will be worth it to not have to hear her scream in pain and fear on a weekly basis.

Laser eye surgery isn't typically a big deal for adults, but it is for babies. She'll be completely sedated for the procedure as well as intubated and back on the ventilator. Which breaks my heart to even say. Occasionally I look back at some of Sadie Ann's first videos. In the background is the haunting sounds of beeps and dings that elicit this indescribable, gut-wrenching feeling I hoped to never feel again. While this particular situation is quite different, any trip to the NICU that involves your baby on a breathing machine is frightening.

As with any surgery, there are benefits and risks. In this particular situation, the benefits out weigh the risks. We are praying for a successful surgery without any complications. We are also praying that she recovers quickly, comes off the ventilator quickly, and we are back home in just a few days. The doctor says we could be in the hospital anywhere from two to seven days - depending on how the procedure goes, if we run into any complications, and her recovery.

The thought of stepping foot in the NICU other than to just visit some of our favorite people makes my heart sink to depths I try to forget about. But this has to be done. Time to put on my strong mama hat again, take a deep breath, and start preparing myself to walk back into NICU.

Rooming In

I can't believe we've had Sadie Ann here at home for over two weeks. I wanted to share some pictures from our first night together with her. Sure, it was spent in the hospital and I slept a combines 12 minutes, but it was the best night ever. Plus, we've had a lot of practice at living in a hospital. 

A couple weeks into her NICU stay, a nurse mentioned to me that prior to Sadie Ann coming home, we'd have to spend the night with her to help ease into taking her home. Since I knew very little about the NICU, this came as a surprise. We'd spend the night with her? Looking down at her only a couple weeks old, with so many tubes, leads, and IVs, the thought of us taking care of her was nothing less than frightening. However, as time passed and she continuously improved, we began to long for the day our daughter wasn't hooked up to a monitor and we could hold her without having to strategically place our hands in order to avoid setting off alarms. 

Then that day finally came. 115 days behind us. 

This hallway is so significant to her journey. We started all the way on the other end in Room 1. She spent the majority of her NICU stay in Room 1 because of her critical condition, but as she improved and eventually became "the best baby in the room" (medically speaking), she was able to move down the hall. We eventually found ourselves in Room 2. Then Room 3. And, lastly, Room 4. 

Room 4! The room babies graduate from! 

Below, Room 4 is the closest door on the left. This picture is taken right in front of the room we stayed in. We had finally made it all the way to the other end of the hall. 

The rest of the pictures are my attempt to document that special, long-anticipated, and slightly frightening night on Thursday, April 9. 

This picture below is so special and significant to her journey. I wanted to focus in on her ID tag. It's something she has worn since December 16. Most babies are in and out of the hospital within a couple days. I image their ID tag hardly has a bend on it. Sadie Ann's is crinkled, the edges are folding up, and a lot of the ink has faded and even worn off. A true sign of how long and wearing her time in the NICU was. 

Nothing but smiles at 2 o'clock in the morning! 

After a long night, the morning seemed to (thankfully) fly by! Shortly after shift change, we spoke with the nurse practitioner and the doctor and heard the word discharge. 

Discharge. A word we honestly did not know if we would ever hear. 

After we got word that we would be leaving soon, we dressed her up in her going home romper and bonnet. 

And then we left the hospital. Just the way we would have if things had gone normally. 

Sadie Ann was welcomed home with decorations inside and out (courtesy of a sweet friend and neighbor) and a sign from Footprints Ministry. Katie was ecstatic (and a bit confused) to finally meet her little sister. Our little girl is finally home and everything feels right in the world. 

We give God all the glory that this little girl was able to come home. She had all odds and statistics against her, but we know from the beginning He was in control and had a plan for this little girl. So thankful His plan invoked us bringing her home. We could not be more amazing and thankful for the miracles and blessings performed in the past four months. 

A Bittersweet Week

The first picture of all four of us. 

At our gender ultrasound appointment, two days before my water broke, we discussed a tentative date to have a c-section with my doctor. She voiced that she recommend a c-section at 37 weeks for her twin moms and we agreed. So we went ahead and looked at a calendar, found my 37th week, and planned for that Monday, March 23rd. I thought, what a wonderful way to start a week. 

I expect that had everything gone the way we'd planned (ha!), we'd be taking home two beautiful, health baby girls this week. Instead of typing this, I'd be listening to two newborn girls, using their perfectly healthy lungs, to scream and cry - alerting us that they are hungry or want to be held. But I'm not. I'm surrounded by late-night silence. A cruel reminder that things did not go the way I prayed they would. 

That being said, given everything that has happened in the past five months, I'm incredibly grateful to be able to hold and love on a relatively healthy baby. It may only be twice a day, with limited amounts of time to keep her out of her isolette, but it's more than I could have asked for. It's more that what statistics say I should have. And soon enough, I will no longer be surrounded by late-night silence. 

For that I am grateful. 

It is a bittersweet week.