Happy 6 Month Birthday Girls!!

I can hardly believe that we are the parents of three six month old baby girls! It still seems so surreal at times. I am happy to report that all is going well with each and every one of them. Z is still on 1 to 1 1/2 liters on her regular canula, her steroids are continuing to wean, and her sedation is almost gone - as the nurse said "it's just a drop". She got a GI consult and had a swallow study done. The doc wants her to have a ph probe on Monday which will monitor the severity of her reflux. If it is moderate to severe they will recommend an operation in which they wrap part of the stomach around the bottom of the esophagus so that things can still go down, but nothing can come back up. Her neonatologist believes that the scarring on her left vocal chord could very well be from reflux in addition to being intubated for so long. He also said that if her reflux is not under control it could suppress the development of her lungs because when she refluxes she could be aspirating into her lungs thereby putting her at risk for developing an infection - something that she absolutely can NOT tolerate. So, we'll see what the ph probe tells us.

She was able to take a small bottle this week - the swallow study showed that she needs thickened feedings just like her sisters because she aspirated on thin liquids. Unfortunately I was not there for her first bottle, but I'll get to give her one soon I'm sure. OTPT said that her trunk control is imporving and she is even attempting to roll over when she's down on her floor mat. She had a few restless and fussy days this week which was due to the Reglan they put her on for reflux. I told them after the first day of her nurse telling me that Z was not herself that L had responded poorly to Reglan too - she became very irritable and did not sleep well. So, they dc'd the Reglan and her nurses report that she is back to her happy, social self.

I brought A and L to see Z this week and we put A in the crib with Z - they just squirmed and squirmed until they were pressed up against eachother and even stared at eachother. It was too cute. We've also found out that A, who is our laid back observer - can be pretty sneaky. Richard had A and L in the crib at home getting them ready for bed and A would reach over to L's face, pat around on her and then flick her paci out of her mouth! He said she did it more than once too. She'll be like me when I was younger and whisper something mean in her sister's ear so her sister hauls off and socks her and then gets the blame....

We had Babies Can't Wait come this week - which is our Early Intervention program for babies from birth to age 3. They brought a feeding therapist and a development specialist. Had it not been for the feeding tubes the girls would not have qualified for services because developmentally they are doing really well. They have great head control, they reach and grasp, they are starting to try to roll over, they track and follow well, and they can sit with support. Their pediatrician says they are still a mix of their gestational and chronological age so we can expect to see them do things a 3 month old would do as well as a 4 or 5 month old.

The most challenging thing with them is feeding - sometimes they suck the bottles right down and sometimes they scream and cry and won't take anything. I get so frustrated and depressed and wonder how long they're going to have these tubes? Of course Richard always brings me back to center and reminds me that there are so many other things that could be wrong with them that aren't. I get so caught up in everything I kept hearing repeatedly in the NICU - "they'll be behind, they will catch up but it takes time and they just need to grow". Well, if they eat, then they'll grow so when they don't eat I'm afraid they won't grow or they'll get dehydrated or they'll fall behind and it will be my fault. I feel terrible for saying this but it makes me mourn again for not having "typical" babies that suck down their bottles and you don't have to hit a total daily volume or total daily caloric intake. They are doing really well and I just have to remember that - and as Richard pointed out - they are improving in comparison to when they came home, it's just going to take a while, they still have lung disease and they still have cordination issues that will resolve with time.

As a way to try to relieve the stress of bottle feeding - because it can be a stressful event for the babies too when they're hungry but can't get organized enough to latch and suckle, we've started some spoon feeding. Their formula is so thick anyway, I always thought we might as well give it to them with a spoon. Avery has taken to it a bit better than Lily. Our Ped told us to start gradually just 10cc's once or twice a day.

6 months is pretty incredible - a lot of what we've experienced has become a blur, and yet some of the days and nights spent holding vigil at their bedsides still cuts into my heart. The amount of fear and worry that envelped those first weeks is almost indescribable. And now, to see these girls with their twinkling eyes and wide smiles, it is breathtaking. They change and grow so quickly right before our eyes...I'm afraid I'll miss something if I blink.

1 comment:

nancy said...

What a terrific blog, Keira and Richard! Happy birthday, Avery, Lily, and Zoe!



All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31