Celia & Isabel: 2011

I am sitting here drinking a cup of coffee (with Almond Milk in it but we will get back to that later) thinking about how incredible it is that our NICU stay is now behind us. After 133 days in the NICU, Celia came home on Thursday, September 1st. After 151 days in the NICU, one day short of their 5 month birthday, Isabel came home on Tuesday, September 20th. Leaving the NICU for the final time was such a weird feeling. Along with being overjoyed, Sam and I strangely enough also felt some deep sadness. The NICU had become our home away from home for so long and we had formed such incredible relationships with the nurses over that time. But we soon started to realize that our children were not supposed to live in the hospital, we would continue those relationships outside of the NICU and that our "normal" life was finally going to begin.

Celia, born 1 lb, 4 oz, came home weighing 7 lb, 5 oz. As of yesterday, she is up to 9 lb, 3 oz and 19 1/4 inches long. Isabel, born 1 lb, 5 oz, came home weighing 7 lb, 11 oz. and as of yesterday is up to 8 lb, 8 oz and 21 inches long. Both girls came home on Prevacid for their reflux, 2 diuretics for their pulmonary hypertension, 22-calorie fortifier and a multi-vitamin. At times, it feels like we are still in the hospital with all of the bottles, syringes and measuring tools in our kitchen. Isabel also came home with an NG feeding tube. For follow-ups, Lia still goes to the optometrist for her ROP (stage 2, zone 3 in the left, all clear in the right and the left is still expected to fully resolve on its own), and both girls go to physical therapy, the pulmonary hypertension clinic, get lab work and frequent visits to the pediatrician.

Milestones - we are already reaching them! Lia first rolled over from tummy to back on September 11th and Isa did the same on October 1st. Isa smiles all the time and is so good at focusing, looking at you in the eyes and following things. And this isn't a milestone, but after a very difficult first few weeks home with Lia (crying non-stop, very irritable, fussy beyond belief), we discovered both girls have a milk protein allergy (found by blood in their stools) and were having bad reactions to the cows-milk based formula we are supplementing. We moved them to a hypoallergenic formula, stopped adding a milk-based fortifier in the breast milk and I cut out dairy & soy from my diet ... and it has made a WORLD of difference. I do miss that cheese though!! This allergy is something the girls should outgrow and I can start enjoying that pizza & half-n-half in my coffee again around 9-12 months of age. Speaking of age, this is something we are always asking. When are the girls considered their chronological age (close to 6 months) and when are they considered their adjusted age (2 months old)? And when strangers ask, "Oh, are they newborns?" how much do we get into the story? Answers are, we need to go by their adjusted age for everything except for immunizations, and to those strangers we nod and say, "Yep, they are newborns."

The girls are so different from each other. Isabel continues to be our laid back lady - she is so content and can entertain herself easily. Celia is still our little nut - she is very determined and wants what she wants immediately or all hell breaks loose.

The girls are getting better at sleeping and understanding days from nights. It took a lot of trial and tribulation, but we have our bedtime routine down (bath, breast milk bottle, sound machine and low lights and down around 10 or 11 pm) and last night the pulled together a 6 hour stretch! During the day we try to get tummy time in, move around from swing, to bouncy, to crib and back through rotation and are taking advantage of the Indian Summer going on in Chicago right now to get all the fresh air we can before winter. I never could appreciate until now how incredibly hard it is to have twins! Being out numbered is hard, and adding in all the little extras for us (feeding tube, meds, doc appts, etc.) brought Sam and I to the decision that I would resign from my sales position at CafeMom and become a stay-at-home mom for a few months while we get everyone on track over here. While I consider this more than a full time job, I am excited to be the primary care taker of those ladies during the day and help them to grow to happy, healthy and smiling little girls.

Cheers to our new life!

Celia's first meal in her new room.

Celia with Grandma, the baby whisperer.

Our first walk with Mommy!

Sonny keeping watch over Lia.

Isa enjoying some fresh air in her bouncy.

Isabel & Celia

Isa fresh from her bath

Isa all dressed up ... where's the party?!

Gangster

Isa sooo happy after pulling her feeding tube out ... again!

Lia sleeping

Celia ready for her walk

Celia in her Sunday suit

Now onto current updates. So what's new since our very, very old post on 7/27 ... lots! Some steps forward, some steps backwards but today we are back in a good spot. A few things that are not "status" related. The ladies definitely have their own, very different personalities. A few words that are often used with Celia are "aggressive", "funny", a "maniac", "just like Sam" and of course, "beautiful", "cute", "love", etc. etc. Isabel on the other is often described as "content", "curious", "calm", "just like Rachel" and of course, "beautiful", "cute", "love", etc. etc. Isabel likes to take everything in while Celia is the one making things happen. We are going to have our hands full once they get home ... which we will welcome with very open arms.

Onto their health status' starting with the gal who got this whole party started.

Celia
- Growth: 6 lbs, 5 oz, 17.6 inches long

- Eyes: The left had had progressed to stage 3 ROP, but as of today, both eyes are back to stage 2, zone 2 which is great news. The doctor still believes this is a classic case of ROP which will ultimately correct itself and not require treatment. Timing wise, we should start to see major improvements within the month. There is a "small" chance the ROP will get worse again, but staying positive it won't. She will still get weekly checks in the meantime which will continue when we are out of the NICU as well until we can say she is 100% clear of ROP.

- Eating: we are up to 52mls, 24-calorie fortified breast milk per feeding. She has no more feeding tube and is doing all the work on her own.

- Pulmonary: we had a follow-up ECHO last week and it appears her pulmonary hypertension is slightly improved which the doctors were very happy with. We will continue to be followed outside of the NICU for this but it's something that she can and hopefully will outgrow and can have no long term health effects.

- Physical Therapy: she gets seen 1-2 times per week and is doing great! They look for symmetry and resistance to pressure which she scores an A+ in.

So what is keeping her there? Eating, eating and eating and breathing while eating. We were warned that this would be one of the more stressful times during our stay and they were right. What we can do is encourage, be patient, and practice bottle and breast feeding with Celia. What we can't do is help her not get tired, keep her taking long, deep breathes or force her to take more than she wants. So that is what we are doing and she is getting better at her part every day. Last week, she had a bit of a setback in that she started to take less and less of her bottles and have more and more major desats. The doctors stopped her feedings as a precaution and performed many tests on her to make sure she was not getting an infection or something more serious. She passed all her tests and the doctors determined she was just tired. They picked up her feedings a day later and slowly increased her back to full feeds. As of the last 2-3 days, she has taken all feedings through the bottle, has not had any major desats, and is kicking butt. Now we just need to keep her there ... and hope she is strong enough now to keep going so she can come home. What we keep hearing is that she needs to get stronger, grow bigger, and "time". We HATE the word "time". It's like slowly peeling a band aid off every time we hear it - but that is the solution for so much in the NICU.

Isabel
- Growth: 6 lbs, 2 ozs, 18.5 inches long

- Eating: this is where our major set back was. 2 weeks ago on a Thursday, Isa had a bloody stool. Prior to that, the amount of food she was willingly taking through the bottle had been decreasing so we were force feeding the rest via her feeding tube. Before the bloody stool, we tossed up the reduced bottle feedings to her getting tired and pooping out. However it turns out her belly was hurting her which is why she didn't want to eat. After blood work, cultures and x-rays, the doctors ended up treating her for NEC (Necrotizing Enterocolitis), which is an infection where bacteria begins to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall can weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is very serious requiring immediate surgery and has a high mortality rate. The scary part is that severe cases of this get really bad really fast and require surgery within a few hours. THANK GOD we did not get to that point, not even close to it. After a 7-day treatment of antibiotics and not eating (she was given IV fluids but no milk for the week, which is one of the hardest times I have had in a while. She had been eating through a bottle for almost 1.5 months at this point, and knows what it feels like to be hungry, eat, and get a full tummy. When she cried over this 7 day treatment because she was hungry, there was nothing we could to expect try to comfort her as much as possible. Needless to say on day 8 when we started the feedings again, I was SO relieved and she was too). She is back to full feeds, 56 mls, 22-calorie fortified milk and is doing well. She is not at 100% yet and still requires some to be fed through her tube, but she is getting better every day. Unlike Celia who tended (putting this is past tense due to our good string of days) to have major destas into the 50s, Isa is slow and steady and typically breathes very well during feeds.

Pulmonary: her latest ECHO showed that her PDA (which had re-opened after surgery) is once again closed and her pulmonary hypertension is also slightly better than the last ECHO. Good news all around.

In addition to the above, both girls are still on a chronic does of diuretics and Prevacid to help with their reflux.