Day 117 and Counting

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.   

Aunt Gaby Visits!  Isa 7/30/11

Nurse DJ Jessie V with Isa 8/1/11

Isa 8/1/11



Celia 8/1/11

Celia 8/1/11



Whatcha looking at Dad?  Celia 8/1/11



Sleeping Beauty Isa 8/1/11

 

Isa 8/1/11



Sleeping Beauty Celia - 8/1/11

 

Isa 8/1/11

Nurse Terrah! 8/1/11

Lia getting ready to eat 8/1/11

Forget the bottle, this works.  Lia 8/1/11

Sister Hang Out Time - I & C 8/2/11

Who is this up in my crib?! - I & C 8/2/11



Ummm ... Dad, you sure you got me?  Isa 8/2/11 

Isa drunk on her pacifier 8/12/11



Isa 8/12/11



Celia 8/12/11

C front, I back 8/12/11

C & I 8/12/11

C& I 8/12/11

C & I 8/12/11

Double Trouble 8/12/11

Happy Isa! 8/13/11

Isa 8/13/11

Lia's first newborn size outfit!  8/14/11

Dad gavage feeding Isa 8/14/11

Aunt Barb & Baby S visit - Lia 8/14/11

Isa 8/14/11

So comfy - Lia 8/14/11

Isa 8/14/11

Dad & Isa - 8/14/11

Mom & Isa - 8/14/11

Isa 8/14/11

Abuelita, Tia Lucy and Tio Ray visit - 8/14/11

Abuelita feeding Lia - 8/14/11

Nurse Susan!  C & I 8/15/11





C & I 8/15/11

 

Isa 8/16/11

Isa 8/16/11