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.

Home

At about 2:45pm on Tuesday, December 29, we walked through our front door with our daughter for the first time in the 145 days since she was born.

We spent most of Monday at the hospital. At about 7:30pm they moved Morgan to a private room in the Ronald McDonald House which is on the same floor as the NICU. She was our responsibility until almost noon the next day. Between getting used to all the little noises coming from Morgan's crib, and the not-so-comfortable bed, we didn't get a whole lot of sleep that night.


Starting care-by-parent. "Are you sure you're ready for this?"

However, Morgan continues to live up to her reputation as a pretty laid back baby. Since being home, sleep is a little easier to come by and we're starting to get our routine down. She does pretty well sleeping in her crib if either of us ever put her in it...of course we're catching up on holding her and enjoying her not being tethered to any equipment. And I'm pretty sure she is enjoying it too.


Ready for bed...except for the sleepy part. (Thanks for the PJs and blanket Uncle Alan & Aunt Cara.)


Story time. In my own room! (Thanks for the book Miss Ursula)

Merry Christmas!

After nearly five months in the NICU, it seems Morgan is just days from coming home. If all goes as planned, Shelly and I will spend at least several hours and possibly overnight in a care-by-parent room with Morgan early next week. After that, assuming there are no surprises, she'll be released to come home with us. The only reason we aren't doing the care-by-parent this weekend is that they are waiting for a feeding pump to arrive that they can teach us to use and then send us home with. With the holiday and the weekend it will be early next week before it gets here.

We knew this news was on its way when nurses started asking "Why is she still here?". She definitely seems ready for this next step. Her breathing and oxygen saturation have been great and her feeds are going really well. She is now up to three bottle feeds a day and finishing them consistently.

The nurse practitioner told us yesterday they are, in fact, being a little extra cautious about releasing her. Since she had gotten some steroid treatments last week for her throat inflammation and only been off the lasix a few days, they wanted to make sure she didn't backslide any with her oxygen needs. Now that she hasn't, they are ready to start the process of releasing her.

First thing is for Shelly and I to spend some time in a private room with Morgan without a nurse and without any of the monitors she's been on during her time in the NICU. It's basically a dry run for having her home. We'll be responsible for all of her care and just have a nurse check in periodically to make sure everything is going well.

After that, they'll give us our final discharge instructions and set up her first pediatric appointments with a special practice specializing in preemies. Finally, she'll need to pass a car seat test, usually the day of release. She'll have to stay in her carseat, in the NICU, for an hour or so while they monitor her. As long as she doesn't have any problems during that time she'll be ours to take home.

We could not be more thrilled with her progress. It really is amazing to think about all the problems she overcame and all the issues that she avoided completely. It's hard to imagine what it will be like to have her home, but I'm sure it will be a great improvement over our daily trips to the hospital.

Once again, thank you all for your thoughts and prayers during the last five months. They really do mean a lot to us and to Morgan. We could not be think of a better way to start the new year than with this new addition to our family, finally home where she belongs.

Merry Christmas!

Goodbye Oxygen Support!

This morning Morgan was taken off the nasal cannula completely. So far she has tolerated it without a problem and we are very excited! If she can continue to do well without the extra oxygen then she won't need it when she comes home either. Even if she doesn't make it home for Christmas, having her stay off the cannula will make for a pretty great gift.

In other good news, she also passed her hearing test last week. Premature babies have an increased risk for hearing and vision loss so they will be testing her regularly for a while.

With all the progress she is making, the nurses are also taking steps to get her ready to come home. Today they flattened her bed instead of having it on an incline so that she will be used to that when she comes home. She wasn't real thrilled with this at first. The nurse said she was laying there crying and kicking but she eventually got her to calm down. They will also try bottle feeding again this week. She has been much more interested in her pacifier since the surgery so we hope this will translate into successful feedings.


This is much better.


I love my Nana!


zzzzzzzzzzzzz


Who took my pacifier?

More Comfortable

After dealing with some pain from her g-button site, Morgan finally seems more comfortable. Many of the nurses have commented in the past on Morgan's good temperament but she let everyone know the last four days that she wasn't happy. Her g-button was leaking and there was really little they could do but let it heal on its own. It was leaking milk from her stomach which is acidic and burns. For now they have decreased the amount of milk and stretching her feeds over two hours, hoping that by not filling the stomach as much the leakage will decrease. The last day she hasn't had any leakage and she is a lot less cranky. She has lost some weight and is down to 7lbs 3oz but the doctors aren't too concerned. Once the button heals they will be able to increase her feeds again and she should get back to putting on weight.

Saturday night Shelly went up to the hospital with a friend and Morgan was awake most of the time from about 8pm to midnight. The nurse said she was awake when they left until 4am. Hopefully she will not come home with mixed up days and nights. It was nice to see her so alert again, but without all the crying.

It will be another week or two before they start bottle feeding again to let her airway heal from the reflux and from the vent tube. She still has "stridor", a fancy word for wheezing. As of right now, it looks like she isn't quite going to make it home for Christmas. She's almost where she needs to be but the only treatment for these last few issues is time so we'll have to be patient a little longer and hopefully she'll be home for New Year's.

Off the Vent

Morgan finally came off the ventilator Tuesday morning. They tried to extubate her Sunday morning but she didn't tolerate it because her airway was irritated and swollen from the vent tube. The doctors decided to leave her on the vent and give her some medicine to reduce the swelling and help open her airway. It seems to have done the trick as she is back on the cannula and doing well. In fact, she's been on 21% oxygen (same as room air) most of the time, so hopefully that will hold up as they wean down her oxygen flow. With any luck she'll be off the oxygen support completely sooner rather than later.

Besides the vent progress, she is also back on full feeds and off all of the IV fluids. The occupational therapist will probably begin working with her on bottle feedings again in the next day or two. A move back to the 8th floor should also be coming soon as well.

The best news is that she is clearly not having the reflux problems she had before the fundo surgery. She seems much more comfortable during her feeds and when she is sleeping. And as much as she enjoys her pacifier the past few days, she should do much better with her bottle feedings than before. Even if she does catch on to the bottle feeding quickly, the doctors have told us that her g-button will need to stay in for at least 3 months to give the site enough time to heal before they would consider removing it.

We still don't have an exact date for her to come home but now it is just a matter of letting her recover from the surgery. We're still hopeful she'll make it in time for Christmas.