Climb Aboard!

Tighten your harnesses and fasten your safety belts for the most gut-retching, tear-jerking ride of your life! Welcome aboard the NICU-ERATOR! Our ride begins with a slow steady climb we like to call 10 months of worry for the future. You will then plummet down the C-Section Screamer and we promise fear, elation and heart-pounding madness. Next, you will be taken through the twists and turns of medical diagnosis, medical planning and medical terminology. The upside down turns of the “leave your baby here” will leave you sobbing for your life. Sleep will be near impossible as you reach neck breaking speed so prepare for utter exhaustion along the way. We promise ULTIMATE HIGHS and the LOWEST OF THE LOWS as you take a ride on the NICU-ERATOR!
**Disclaimer: This ride will continue anywhere from 2 – 6 months. Highs and lows are guaranteed to last the entire ride and we guarantee you’re tear ducts will feel dry by the time the ride stops. NICU-ERATOR will be closely followed by the SURGERY-A-TRON.

Welcome to our world! I had heard over and over again from fellow parents, doctors and the NICU staff itself that the NICU is just like a roller-coaster. Well, I’m here to confirm that its 100% true. We will walk away from a perfectly successful day filled with good news and I still end up crying into my dinner at night. I know a lot of these emotions are pregnancy hormones but there are still so many things that leave me tossing and turning at night and I still have trouble not shedding a tear each time I leave our sweet girl. I want her home and in her own bed where I can check to see that she’s sleeping soundly instead of calling 7 miles down the road to speak to the nurse about my own child at 2am. Okay, enough of the whining and on to the good stuff.

Harper is going great and we reached a huge milestone yesterday. The NG tube is gone! Look at her precious face. No tape, no tube, nothing but a sweet little angel! Honey (Janet) and I had fun playing paparazzi this morning – can you tell?









We had been testing the bottle slowly, while decreasing her tube feeds. I was getting worried that she was hungry. She’s a pretty passive baby but started getting extremely squirmy and fussy before her little bottle feeds. She would start gnawing on her hands and reaching with her mouth. We were planning on continuing the slow bottle increase until Monday or Tuesday of next week but when we got to the hospital yesterday morning, Dr. Kenton said he checked on Harper at 7:30am and that she did, in fact, look hungry. He wanted to try feeding her by bottle, letting her take as much as she wanted and then, if she held it down, the feeding tube would be gone. Well, our hungry, hungry hippo ate 86 cc’s or what I like to call Thanksgiving Dinner! And I mean she chugged it and fell into the deepest sleep you can imagine. The feeding tube was immediately removed and she continued on bottles for the entire day – we just had to wake her up after her morning gorgefest! She’s now eating about 40 – 60 cc’s per feeding. Our only challenge is how to burp the poor child. We have to keep her on her back due to the omphalocele so we’re trying back rubbing, back pats while suspended in our arms and chest pats. I think Jared and I are building muscles in our arms we never knew existed.

The latest debate had to do with her physical therapy. Harper has a great PT, Mahera, who works with her 4 days a week and has shown us her exercises so we can do them with Harper as well. Since Harper is on her back all day, there’s a concern about her lack of “tummy time” and development of her neck and back muscles. We discussed turning her over on her stomach with her O suspended between Mahera’s legs while she worked on her. Initially, I thought this sounded like a good idea. But when Jared and I sat down to discuss it, we both got very nervous about a possible rupture of the O sac. We are trying to let gravity play a part in pushing her omphalocele contents back in her abdomen so this seemed a bit counter-productive. Dr. Kenton was on board with trying the altered tummy time method but wanted some sort of prosthesis made so that it helped support her O. We were still pretty uneasy and wanted to make sure the entire team was on board so spoke to the surgical team. They felt it was too risky to try this now and asked that we wait until later when the O is a little more stable. I feel more at ease with this scenario. I hate that Harper will be behind developmentally but I’d prefer my little girl come home without a busted gut! Some of the other O moms have mentioned that their kids started the PT later and that they caught up quickly. Guess we’ll wait and see – please keep this as a prayer concern for us.

My latest pity party comes from the fact that we don’t have a fully established Team Harper Night Shift yet. Jennifer is our only night primary nurse and we love her. We just can’t expect her to work 7 days a week! Since we had some discomfort with a previous nurse, I don’t necessarily feel great about having a nurse that we haven’t met in person. Therefore, Jared and I are trucking back to the hospital at night when we have a nurse we haven’t met yet. This is exhausting, especially after I’ve put in a full day at the hospital and Jared’s put in both a full day of work and hospital time. I hope that we can get a more solid night team established soon or that we ease into feeling a little more comfort in knowing Harper will be well taken care of each night.

Her omphalocele is staring to have some tiny little signs of skin growth and we (her personal cheering squad) think her O is getting smaller but I’m afraid it might be just wishful thinking. Other than her O, Harper is seemingly a healthy, happy little girl. If you saw her from chest up or hips down you’d think, why is this child here? If it wasn’t for that pesky liver and bowel sticking out, we’d be normal parents with a baby at home. But, alas, that’s not our road. We’ll keep holding on tight as the roller-coaster takes us up and down through emotional twists and turns and trust that God is at the helm of this big scary coaster and only He knows the final outcome. I don’t know about you but I’m hoping for a laser light show at the end!

Much love,

Brooke

**I hope this works – I’m going to try to post a video from our Flip Camera that we took today. It’s of Harper eating and a little tour of her surroundings. If it works, I’ll try to post some of the past videos I’ve taken over the last week and a half.