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.

Recovering Well

The surgery went just as planned. Morgan seems to be recovering well. When she does wake up she cries although you can't hear her because of the ventilator. She is on morphine though to help and is also on fluids. We hope she can soon be weaned from the ventilator. They said her left lung seemed a little flat on her chest x-ray so they have her on her right side to help "fluff" it back out. Morgan has had that happen several times so although it doesn't sound very reassuring, it does work.

On the picture you can see the g-button. It is above her belly button on her left side. This will stay in at least three months. The surgeon explained that if she started taking all bottles, the button would still have to stay in for those months because the area around it needs to tighten around the button so when they do take it out the hole is smaller, which makes it heal easier. The long tube coming from it is where she will get any food that she doesn't eat by mouth.

It is very hard to see her look sick again. We know though that this was her best option and it will be exciting to see her recover and not be uncomfortable from the reflux. Now we just have to wait it out and know that all of this is more temporary than the previous times.

One More Surgery

It's become clear that Morgan's reflux is not improving and really keeping her from taking full bottles. So Friday morning Morgan will have a fundoplication, which should put a stop to her reflux, as well as a g-tube placement for feeding until she recovers from the surgery and can master bottle feeding. In preparation for the procedure they did a barium swallow test to make sure there were no surprises during surgery. While it didn't show any anatomical problems, it did confirm the severity of her reflux, as she began refluxing and aspirating the barium within a few minutes.

She will have to be put back on the ventilator for the surgery but the doctors expect her to be back on the cannula fairly quickly. So, while this is not ideal, it is the best thing for her right now to help overcome her bottle feeding problems.

The great news is that the doctors expect to send Morgan home 10-14 days after the surgery. That means she'll be home by Christmas Day or a few days before! As you can imagine, we are extremely excited that we're getting so close to having her home. Even though there will still be challenges ahead, having her home is a huge step in the right direction.

Tonight she was particularly crabby. I think it sealed the deal when the surgeon showed me the spots that they would be cutting. She must have known.

4 Months Old.

Morgan turns four months old on Monday and is closer to coming home every day. She is still on some oxygen support but not enough to prevent her release from the hospital. Really, her difficulties with bottle feedings are the only thing keeping her there. The NICU only gives her 30 minutes to finish a bottle because otherwise she burns too many calories. Last week, it seemed like her reflux issues were the main culprit, but several times this weekend, keeping her awake long enough was the bigger obstacle to finishing a whole bottle.

This week we'll be talking with her doctor to decide the next step to overcoming this last hurdle. Since the medicine she is on seems inconsistent at best, it's possible that she would need a procedure called a fundoplication to take care of the reflux. Unfortunately, that would also require her to have a either a g-tube, or g-button placed for feeding purposes, at least temporarily, until she recovered from the surgery and is able to master bottle feedings.

In either case, it seems she is only a few weeks from coming home and we are very excited for that day to arrive. One of the things that four months in the NICU gives you is a new perspective. While another surgery and feeding tube are not something we look forward too, we realize how lucky she is for this to be her biggest challenge. The fact that Morgan has avoided so many other complications, and will most likely outgrow the ones she does have, is something Shelly and I are very thankful for.

We spent most of Sunday afternoon at the hospital with Morgan and took some video of how she spends her time.

...and repeat every three hours.

Moving Up

Today Morgan was moved up a floor to Level 2. The nurse who had Morgan on her very first day was the same nurse who had her today. We are going to miss a lot of the doctors and nurses that we have become so familiar with but seeing how nice the accomodations were helped out with those feelings. Morgan gets her own room and we can spend the night as well as not be restricted by any visiting hours.

Morgan's reflux seems to be better and so her bottle feeds are going a little smoother. She is up to three bottles a day. She still has a ways to go with them but she seems to be tolerating them although not quite finishing them. We feel like their may be an end in sight......

Today she weighed 6 lbs, 15 oz. Almost 7.....