Firsts…

Well, it seems an update is a little overdue. There really hasn’t been anything out of the ordinary to pass along. Obviously, we’ve come along way from our NICU days.

Morgan continues to do really well developmentally. She appears to be right on track for her adjusted age of about 7 months. However, she is taking her time transitioning to solid foods though,which is to be expected due to her time on the ventilator. She has had some occupational therapy to help with this and will continue to get their assistance. Still, she has made a lot of progress over the last few weeks and it seems it is just a matter of time.

Not surprisingly, recent weeks seem to be a series of firsts for both Morgan and us as a family.

First picture in the Bluebonnets

First Easter

First solid food (not what you would call enthusiastic)

First Mother’s Day (good gift = a nap)

First time in the pool

First tooth (or at least the drool caused by it)

First drive (just making sure you're paying attention)

First Father’s Day (as well our first attempt to use a bow to hide the fact that she’s wearing boy clothes.)

First trip to the beach (she was not a fan at first, although she did try to eat the sand, so like I said we’re making progress.)

And today she got closer to another big first -- crawling. She is starting to “scoot”. This is gonna be trouble.

Also we meant to do this sooner, but we want to give a special thanks to everyone who participated with and/or donated to our March of Dimes of team. Can’t wait until next year.

Television Debut

Shelly, Morgan and I, along with some of our friends and family, will be participating in this weekend's March for Babies. It is the major fundraising event for the March of Dimes, which is the leading non-profit supporter of research, community services, education and advocacy relating to prematurity, birth defects and low birthweight.

With everything we've had going on lately, including me starting a new job last week, we haven't spent a lot time fundraising or recruiting others to walk with us. However, if you're reading this, there is still time. You can donate to our team or sign up to walk with us here.

http://www.marchforbabies.org//s_team_page.asp?seid=1367274

However, we did get the chance to help out the event in another way. Morgan's story will be featured this weekend on one of the local news stations to promote Sunday's walk.

On Wednesday, the three of us and Dr. Khan, who oversaw a lot of Morgan's care while she was there and is the director of the Children's Memorial Hermann NICU, met with a crew from KPRC Channel 2 in Houston. It is scheduled to air on Friday, possibly Saturday, and on the Sunday morning newscast.

Probably more exciting than doing the interview was getting to see how impressed Dr. Khan was with Morgan's progress. Knowing that he deals with premature babies on such a regular basis, and seeing how amazed he was that she can already roll over, hold her head up so well, and the way she focuses on people and things was a really nice feeling. It absolutely reinforced how far she has come and how grateful we are that Morgan is doing so well.

While we were back at the NICU, we also ran into another mother who we had met during our stint there. Her baby was born at the same gestation just a couple days after Morgan. The baby is doing well now, but unfortunately has had more setbacks along the way and still has at least another month in the NICU.

Knowing that Morgan was just as likely to still be in the hospital is a scary thought. She is clearly the exception to the rule. Which is why we jumped at the chance to support the March of Dimes by particpating in and promoting the March for Babies. As Dr. Khan said, if she had been born ten years ago, Morgan would not have survived. The funding and support provided by March of Dimes is why it is possible today.


The March of Dimes needs you to help more babies get...



...from here>>>>>>>>>>>>>>>>>>>>>>>to there

Thank You!

Swallow Study

Morgan had a follow-up swallow study yesterday to see if we could discontinue thickening her milk. We were surprised that the test showed she wasn't ready yet. As they thinned the liquid more and more, some would go down her air pipe which puts her at risk for pneumonia. Unlike when she had her first swallow study, this time she didn't cry or fuss. Instead of taking the bottle right away she had fun by chewing on the nipple and not wanting to eat. For Easter Sunday service she did the same thing with chewing on her pacifier and likes to laugh when it pops in and out of her mouth. Its amazing in just these last few days how easy it is to make her smile and laugh.

Happy Late Easter....

Old Friends

On Monday Morgan had a follow-up with her pediatrician. Since it is in the medical center, I dropped by the NICU to let them see how big Morgan has grown (12 lbs!). I had hoped to visit with some of her former nurses, but was unlucky that all of her regular nurses were not working. We did however get to see two of her regular doctors which I did not expect. It was funny to see them discreetly check her muscle tone, eye movement, etc. We will always appreciate how good they were to Morgan and us.

Her Doctors appoitment went well. Luckily she doesn't have much going on. Her coughing and reflux has improved tremendously and they were all in agreement that she was already teething. We have tried so many different teething toys but nothing has worked better than washing our hands and letting her gnaw on one of our fingers. She will have a followup swallow study in a few weeks to see when we can begin to wean her off of the simply thick gel (being added to her milk since she was aspirating a little bit of it). Early Childhood Intervention is still coming every other week and does not see anything to worry them. Morgan is rolling from her belly to her back but not quite mastered the opposite.

Grandma has not seen her in a while so we are excited to see her for Easter next weekend. All she has heard is Morgan's screaming in the background on the phone. Now she can hear it in person. haha


Forget all the fancy toys


Beginning to smile and softly laugh


Dr. Ursula Nawab was with us from the delivery room on. She knew Morgan's chart front to back and with binders of information that was no small feat!


Dr. Amir Khan, Medical Director. Dr Khan was our Doctor after the first week and was very upfront with us on everything. No sugar coated information which was hard to swallow but glad to know the truth. Morgan has also started to pull her clothes up and put them in her mouth. This one had a bow so it was even more tasty.

Still Growing

Morgan blew past the seven month mark a couple weeks ago and continues to amaze us with her progress. Although, there really isn't anything out of the ordinary to report, which is a nice change compared to her NICU days.




Early Childhood Intervention (ECI) has visited a couple of times and reported that she is doing well and seems to be right on track developmentally. Her head control is excellent and she can roll from her tummy to her back on occasion.


Trying to catch up with Hank who comes to visit during the day a couple times a week.

ECI also agreed with our suspicions that Morgan has already started teething since she thought her gums looked swollen. We thought that was the case when she started drooling a lot more and would sometimes chew on her pacifier or bottle instead of sucking.


Finding a new use for her thumb.

In addition, she is also getting much more vocal than when she first came home, in both good and bad ways. She will smile, laugh and coo. But she will also give us an earfull if we aren't entertaining or soothing her the way she would like.


ROAAAAR!!! (okay it was a yawn but you get the idea)

She weighed 10lbs 15oz at her last appointment but that was at the end of Feb so she should have added to that by now. At the time she was going through a phase where she didn't seem to want to eat much. The doctor said not to force it and not to worry.


Sleeping > Eating

In the last week, her appetite has really picked up again so I guess she is trying to catch up now. Also, her reflux seems to have improved immensely. We're not sure if it's the medicine finally kicking in, or the fact that she is growing, or both, but regardless we are thrilled that she is so much more comfortable after eating.


Maybe this isn't so bad after all.

She also had her first weekend trip to Brenham recently to visit with Nana and Papa.


Nana and Papa have the best toys.


Best seat in the house...Nana's shoulder.


Ready for church.

Goodbye G-button

Things are going really well with Morgan. She continues to do great with her feedings. In fact, she has done so well her doctor decided to remove her g-button on Monday. Only a few hours later, it appeared to be closed already. The only care instructions we have is to sponge bathe her until it is definitely closed. Having her g-button gone is such a big step for us and we are very excited about it.

Also, Nana's math was right on as she weighed in at 9lbs 8oz at her appointment a couple of weeks ago. On Monday when they reweighed her at her 6-month check-up she was already 10 lbs 3 oz. With a steady weight gain and no g-button, the doctor also said to feed her on her cues only and to not worry about keeping track of her intake, another big change for us.

Morgan does continue to cough and show signs of refluxing, despite having the fundo surgery. The doctor prescribed some medicine for it to see if it will make her more comfortable.

Morgan also faired better than I did at not catching Shelly's cold a couple of weeks ago. I think it's a good sign that she was the only one in the house that has managed not to get sick since her arrival.

She also seems to be in a good routine and sleeps 3-4 hours at a time during the night, sometimes closer to six. We've been really pleased with the nanny we hired and owe her thanks for Morgan sleeping so well at night. She is wonderful at interacting and taking care of Morgan during the day and does her best to keep her entertained rather than letting her sleep all day.

In addition to growing in size, it's also obvious that she is making some strides developmentally. She has gotten much more active with her hands. Recently she tends to grab onto your fingers or put her hand on the bottle for the duration of her feeds. We've also seen her grab her pacifier and pull it out of her mouth as well as grab and hold onto small toys. She has also started smiling some in response to us talking to or bouncing her.

ECI (Early Childhood Intervention) came to the house today and assessed her. Her corrected age is two months and one week. She seems to be at about a month to a month and a half on many of the things so they will start to come twice a month to help with her progress and to coach us on things to help her catch up.

Below is a video of her g-button being removed. Fair warning, the video is probably not for everyone so if you are at all squeamish you might not want to watch it. There are also some photos suitable for everyone.






Eat.


Sleep


Play.

(Morgan got to meet her cousin Adison for the first time a few weeks ago. I think they both enjoyed it.)

On a roll....

Well, it's been about three weeks since Morgan came home and we're getting requests for updates. Unlike her stay in the NICU, when we always had something new and sometimes something scary to report, her transition home has been a pretty typical experience.

The highlights are that she has maintained her laid back demeanor, which we are very grateful for. No uncontrollable crying and actually very little crying at all. Her days and nights were a little mixed up at first, but we seem to have gotten that straightened out.


More of this...


...than this

Mostly, we are very happy to say that we have not had to use her g-button for the last two-weeks. She has been taking all of her feedings by bottle. At first, we were trying to keep the every-four-hour schedule they used at the hospital but it seemed to be too much for her take at once. So after her first checkup we decided to just feed her when she seemed hungry and track it to make sure she was eating enough. Since then she has been doing really well. And lately she has gotten to where she sleeps more during the night and then catches up on eating during the day, which is really nice.

When she left the hospital she was 8 lbs, 3 oz. A week later at her pediatrician appointment she had only gained an ounce and a half, but then two days later at her follow-up with the surgeon they said she was 8 lbs 14 oz. So it seems the three scales weren't exactly synced up.

Grandma came to stay with us for few days after Morgan arrived. The following week Nana came to help out for a few days and really wanted to know what Morgan weighed now. She decided she would weigh herself holding Morgan and then again without holding her. Based on that, she said Morgan was 9+ lbs, but she wouldn't let me check her math for some reason...just kidding Nana. We love you. Please come back and babysit again.


Still growing!

Morgan does tend to cough some, mostly after eating and especially if you lay her down right away. We went ahead with a swallow study last week to make sure the fundo surgery is still holding strong. It seemed fine so they think it might just be pressure against the fundo that is making her cough. They did see some aspiration when she swallows (fluid going down her trachea instead of her esophagus) but not enough to worry them. For now we continue to thicken her milk with "simply thick" gel to keep the aspiration to a minimum. She does seem to cough less as time goes by.

As we mentioned, Grandma and Nana were a tremendous help with Morgan for the first couple of weeks that Morgan has been home. However, we knew neither of them could stay forever so we had to make other childcare arrangements. Daycare was not a good option for Morgan right now because of the exposure to germs from so many people, so we found a nanny to come to the house while we both work. She has a lot of experience and seems to be really good with Morgan. Her last family had nothing but wonderful things to say about her but since the kids were both school-age now, they had to let her go.

A lady from Early Childhood Intervention came by today but they did not do an assessment yet. Shelly filled out all of the paperwork and they will return in February. They said it will be hard to tell what, if anything, she will need help with until she gets a little older. Once a few months have gone by they will be able to get a better judge on her and will guide us on anything we should be doing to help her along.

We'll try keep everyone posted on how things progress and any hurdles that she has to leap over. For now she is still finding a routine and keeping us busy.