1st birthday

Bath time pictures

Standing up

11 months (Almost)

Alex and Mabry both have 2 teeth & are both crawling. Mabry loves baby food & Alex is starting to like it better. Mabry has 2 doctor appointments next week. One with renal for her high blood pressure. I'm hoping we can stop taking her blood pressure. She has only needed medicine a handful of times over the last month. She only gets medicine if her bp is over 80. And it is nearly impossible to take her blood pressure anymore since she is so wiggly. The other appointment is to check on her head/ metopic ridge.

6 Months

Alex & Mabry turned 6 months adjusted last week. They had an evaluation, and both scored within normal limits for their adjusted age, which means no therapy is needed at this time. Mabry weighs 15 pounds 1 oz., is getting her first tooth, and just started crawling over the weekend. Alex weighs 16 pounds 3 oz, no teeth yet, he isn't crawling, but it won't be long, he is catching on quick. They just love Taylor.

Mabry's Craniosynostis update

Today Mabry saw the craniofacial plastic surgeon for her Metopic ridge situation. We got pretty good news. While her ridge is prominent, she does not have the other characteristics of craniosynostosis. He  said her case is borderline and doesn't think she will need surgery. He wants to see her again in 2 months to look for any changes.

Busy day

We had a full day of appointments. Well, really a few appointments and a lot of waiting around. First, Mabry had her ct scan to evaluate her metopic ridge situation. We don't know the results yet. She sees the doctor for this on the 7th, but we hope to get some preliminary results of the ct scan in a few days. Next, Mabry had an echocardiogram & EKG to look at her heart. Everything looked pretty good. She still has small PDA, but it is not causing her any problems. The doctor expects it will close at about 1 year old and is not concerned about it at this time. They want to check her again in a year. We got to talk to an occupation therapist about Mabry's feeding problem, sleep eating. She said keep doing what we are doing, she is happy with her weight gain, but she did say we can introduce cereal & baby food & even a sippy cup. Finally, both babies had an eye exam. Both have astigmatism and Alex is near sighted and Mabry is far sighted. He said Alex may need glasses when he gets to school age, but considering all the eye issues micro preemies can have, we didn't get any of them. Pretty good news so far, hoping for more good news when we hear results from ct scan.

Good news, Bad news

We had a full day of appointments yesterday. Mabry had a kidney ultrasound, which revealed the calcification is gone. Both babies had evaluation with physical therapy to check their development. Both of them are doing great. Alex has the development of a 4 month old and Mabry is slightly better with the development of a 5 month old. They will be evaluated again at home in August by Illinois Early Intervention. They will not have to be seen at Cardinal Glennon for nursery follow up for about a year, when they will have a Bayley Test. The Bayley Test is a rather lengthy test that will test their development in depth. 

The bad news is the doctors discovered Mabry has a Metopic ridge, a ridge that runs on her forehead to her soft spot. We aren't sure what this means yet. Many babies have a Metopic ridge, but it can also be a major problem, called Craniosynostosis. This happens when the plates in the babies head fuse together prematurely, and causes their head to be mishaped and can not give their brain sufficient space to grow. They took X-rays, and sent them to the plastic surgeon we were seeing yesterday anyways. The surgeon was not able to view the X-rays but said the reports indicated her plates did not appear to be fused. She said her colleague would look at the X-rays and pictures she took of Mabry, and likely order a CT scan. If it turns out Mabry has Metopic Craniosynostis, she may need a nasty surgery to unfuse the plates in her skull. We are trying to be hopeful that this will not be the diagnosis and surgery will not be necessary. The surgeon also looked Mabry's nose, and will look at it again in 6 months.

All dressed up

Rollin

We have 2 rollers now. Mabry started rolling from back to tummy over the weekend. She holds herself up pretty good, too. 

Memorial Day

Mabry makes a handsome boy, we added a bow later.

Taylor in her brothers shorts.

1st walk in the stroller

4 months old (adjusted)

Today Alex & Mabry are 4 months old, adjusted age 7 1/2 actual.

Mabry follow up at CG

Mabry had follow up appointments at Cardinal Glennon today. The first was nursery follow up to check her growth since her hospitalization last month. They are happy with her weight gain. She is at the 30th percentile for her adjusted age. Then we had nephrology appointment for her blood pressure & kidney issues. They adjusted her medication dosage & took a urine sample, we will get the results from that tomorrow. We are hoping it shows her calcium levels are normal.

We come back in 2 weeks with both babies for a very busy day of appointments. Mabry has kidney ultrasound, both have development check up with physical therapy and nursery follow up, & Mabry will get her nose looked at by plastic surgeon.

A couple weeks after that Mabry has an echo of her heart to make sure her PDA closed and to check for any thickening of the lining of the heart, a possible consequence of her high blood pressure, and both babies have another eye exam.

Update from home

Alex & Mabry are doing pretty well. Mabry still has feeding issues, but is keeping up with Alex in weight gain. Alex weighs 13 pounds 8.5 ounces  & Mabry weighs 13 pounds 1.5 ounces. Lately I've been feeding Mabry while she's asleep, not ideal, but it works. Alex is rolling over, from back to tummy. Mabry rolls to her side, but hasn't made it all the way yet. Mabry is quite the blabber mouth and Alex loves to kick his feet.

Update

Alex is good at smiling now.

They are starting to like each other again.

Mabry update

We're coming home! She has finished all but 2 feedings since yesterday at 9:00am & those were at 9:00pm and midnight, so  she just wanted to go back to sleep. More importantly she has also gained weight. I got a refresher lesson from occupational therapy on techniques to help her eat better.

Updated* update on Mabry

Mabry is still not eating well,about 19 ounces yesterday. They would like her to eat 24 ounces each day. Despite this, she has had good weight gain since admission on Thursday. All her labs are good, and her thyroid tested fine. They are watching her blood pressure. She had some pretty high bp's in the upper 90's-100s yesterday morning, but overnight they were much lower in the 70s-80s. They have given us a new cuff for home. Ours has had a leak and may not have been giving us correct readings. If she gains weight overnight, we will get to come home 

*Update* So far today has went much better than yesterday. She has ate well her last 3 feedings at 9:00, noon & 3:00. And she's feeling pretty in her bedazzled onsie, though she was still cute in her hospital issued whitey above.

Mabry being re-admitted

Unfortunately Mabry has regressed and is being re-admitted to the hospital in St.Louis.   We have made great efforts but she needs additional help.   Doctors will evaluate her over the next few days a provide her with treatment and therapy while considering other options.   

Mabry making some progress

Mabry has gained some weight this week and the nursing staff reviewed detailed feeding logs documenting her progress.    She has slowed down on her feedings the last two days but we are getting her to eat 14 to 16 ounces each day.     CG staff has asked us to bring her in next Thursday for follow up.   Hopefully she'll keep making progress and gain lots of weight by then.  

Opening Day!

Happy Easter!

Alex was a little green with envy watching Taylor eat her bunny.