The G Tube Is In

First of all,our internet is down at home and I haven't had a chance to call on it yet. I'm using the computer at the hospital right now.

Second, Abby had her surgery Monday afternoon. They had originally scheduled her for 8:30 am, but we knew she could get bumped until either later in the day or a different day altogether if theyhd emergencies that took precedence over her. We all arrived that morning, but they rescheduled her until 1:00. However, they didn't come get her until around 3:30. Joshua did fairly well for being cooped up most of the day. She was back in her room around 5:45 and pretty cranky coming out of the anesthesia. She has 3 small incisions in her abdomen, one of which is in her belly button and another that has the tube in it.

It is now Tuesday around 1 pm and she has been doing well with continuous feeds. They've done one bolus feed (a larger amount over a shorter time) and will do another one at around 3:30. If she tolerates this well without any throwing up then I can take her home. I have to leave in about an hour to pick J up from Kindergarten. Then a friend is picking him up around 4:30. At that point I'll head back down here to get the girl. In the meantime the health care company should be calling to set up a time for them to drop off and demonstrate the pump and supplies.

Next week she should start seeing a speech therapist on at least a weekly basis, maybe more often, to work on her feeding skills. She had various tests down here and we still can't explain why she doesn't want to eat enough on her own. Hopefully the therapist can help get her back on the right track.

In regards to Joshua, yesterday was much better at Kindergarten, but he still says it's boring. But healso says he had a great day. Depends on which mood he's in at the particular time you talk to him about it. Hopefully we can get life back to a little bit more normal for him soon.

And the saga continues

It's been a tense week of watching and logging Abby's intake and outtake. Yesterday morning Mark and I headed down to PCMC in Salt Lake with Abby a little before 6:30 to admit her. She had only taken in around 7 1/2 oz during the previous 24 hrs and her urine output was about half of the minimum they want to see over the last 12 hours.
Of course, it was also Joshua's first day of Kindergarten, so I had to take him over to a neighbor's house so she could take him to school. Her camera was busted and when we picked him up I got a few shots. I'm not sure how they'll turn out since my camera has been acting up and is now dead too. I think someone probably dropped it. Joshua had a so-so day. Hopefully he'll have better days in the weeks to come.
So, Abby is on an i.v. and has a nasal feeding (ng) tube in. She's had some tests and has another upper GI sometime today to try and determine how bad her reflux is. No one knows yet why she won't eat. It's also a 3 day weekend, so all of the GI doctors are gone until Tuesday. I'm not comfortable with her coming home with the ng tube. She is notorious for pulling them out and she's just gotten too big and strong for me to put it back in, especially on a daily basis. Also, if she were to pull it partially out during a feeding without my knowledge, then she could aspirate into her lungs quite easily. The plan will be for a g tube surgically inserted into her stomach with a port on her abdomen. However, it could take at least a week to get tht arranged. So in the meantime, here we are. She would then most likely have the tube in for around 2 years until she can completely take in everything she needs by mouth.

9/5 months old

On Monday Abby will officially be 9 months old, but her corrected age is now 5 months old. She is acting like a typical 5 month old. She likes to roll on to her tummy anytime she's on her back. Unfortunately, she hasn't gotten the hang of rolling back yet. She also likes to stand when you hold her and is getting better and better at playing in her saucer. She started on cereal of couple of weeks back. She still isn't real big on it yet and she's still having trouble with eating over all. My birthday was Thursday and she started eating better on that day. She is still eating better, but not up to full feedings yet. We weighed her yesterday at Joshua's 5 yr. check up and she had put on weight, so I'm happy about that. She will have her 9 mos. check up on Tuesday and we will see what the Dr. has to say.

Joshua's birthday was a week before mine and he's enjoying being 5. The Saturday before we had his party at the local fun center where the kids could play on all types of inflatables, plus there is this other enclosed area for younger kids that has all kinds of ramps to climb up, slides, a rope swing, etc... He had a Superman theme, but wanted a number of the Planet Heroes characters from Fisher Price. They're pretty cool. He's learned almost all of the planet names already. Then on his actual b-day we all 4 went out to breakfast at Mimis. This was a first for Miss Abby, and she did very well. Then Joshua and Daddy went to a local bowling alley that also has an indoor miniature golf. Guess it's glow in the dark, and also has other arcade games. Then on Friday Mommy and Joshua went to the Tree House childrens' museum and Farr's Ice Cream shop up in Ogden.

Here are some photos of Superbaby, Abby's first attempt at eating, sleeping like an angel, and I finally got a good smile on film. Also one of her and her brother. Joshua loves his little sister and is always giving her hugs and kisses.

NeoNatal Follow Up

Abby had a weight check on Monday with her pediatrician and for the first time she lost weight-2 ounces. So we started on cereal on Monday. She's doing okay with it.

At her neoNatal check up today she saw a pediatrician, physical therapist and nutritionist. The pediatrician and PT were very surprised with how well she was doing for a 23 weeker. The PT said he saw a lot of positive things, but he is going to take note that she doesn't use her left hand and foot the same as her right. It's something he'll check out at her next appt. in another 4 1/2 months.
Both he and the nutritionist saw a red flag in the fact that she doesn't have very regular bowel movements. They are hoping that this is why she is having eating issues so we are going to try a few things to see if we can get her more regular. We'll see how that goes. She will also see a neurologist on the 18th of the month.

After her appt. we went over to UMC (just a few buildings away from the health dept.) to say "hi" in the NBICU. Almost everyone we wanted to see either wasn't there today or were in a meeting that they couldn't leave. Bummer. But we'll be back down there on Sept 11th for her pulmonologist appt. so we'll stop by again.

Getting out and about

So, we've finally started taking Abby out other than doctors' appts. We took her to the local 4th of July parade. She slept the whole time. Then a week later to our city's heritage days pancake breakfast, then the parade after that. They had SEVERAL emergency vehicles driving very slowly while their sirens were going off the whole time to start the parade. Joshua and Abby weren't too thrilled about this. She finally fell asleep in her stroller while Joshua had a blast collecting candy and other goodies that were tossed to the onlookers. The photo shows his candy score. More than he got at Halloween. I've also taken her shopping twice and run some other errands with her.

And we've taken her to church a few times. We've been meeting in a tent on our newly purchased property. You can see Mark feeding her in the bottom center of the other photo. We had some very strong winds this past week though and the whole tent flipped (yes, it was staked. They just pulled out) and some of the pieces bent. We will be meeting in the barn like building until the new tent we've ordered arrives and is put up. Eventually the barn structure will be converted into a sanctuary.

This week we have a couple of dr. appts., one of which is down in Salt Lake. This is her Neonatal Follow Up through the health dept. She will be seeing several different specialist including a nutritionist. I'm hoping they will be able to help out with her eating issues. She hasn't been eating well for almost 7 weeks now. She hasn't lost any weight yet. She has another weight check on Monday. She should be eating 2-3 ounces per pound of weight. She is now nearing 13 pounds and is only eating 12-14 ounces per day. We would appreciate any prayers in regards to this issue as it has been very stressful for me. She seems okay otherwise. However, she does sleep quite a bit during the day as well as at night. If she doesn't start eating better she may need to have a g-tube surgically inserted. We'll see.

reaching some milestones

On Wednesday, July 30th Abby rolled from her tummy to her back for the first time. She's only done it that one time, but we'll take it. She still can't figure out where to put her arms to get from her back to her tummy, but she's so close. She rolls onto her side and has been doing this for a few weeks now. She also has begun to grab her foot. So cute. Also this week I put Joshua's saucer together to see if she would like it. She can't reach the bottom yet, but neither could Joshua at this age. I put a folded towel down for him. I thought Abby might need a throw pillow, but I think a towel will do it for her too. She doesn't like to be in it for more than 10 or 15 minutes, but she's figured out how to spin around and check out the different toys. Of course I have to keep an eye on the oxygen tube when she spins. That's a concern I have when she does start rolling over too. I'm hoping that if I feed it down through her clothes and out the bottom she won't be able to wrap it around her neck.

4 months old

Abby is almost 8 months old (on the 25th), but yesterday was 4 months from her due date (her corrected age). She is doing quite well for a 4 month old. She almost rolled over completely from her back to her stomach just a few minutes ago. She just needed a little help getting her one hand out of the way. Hopefully she'll be seeing either a speech or occupational therapist soon. This is to try and figure out why she is being so stubborn about eating. She should be taking in atleast 24-32 ounces per day, but she averages 12-14. This is not enough for optimal growth. As the pediatrician said today, "Thankfully she has some back up chubbiness to keep her going." She weighed in at 12 lbs 12 1/2 ounces today. That's up about 6 ounces from 3 weeks ago. Other than the eating she's doing pretty good in other areas. She's a very happy baby most of the time who likes to smile and chat with you.

4th of July

On the 4th we went to the local parade. We went last year and discovered that the kids bring plastic bags to collect all of the candy that is thrown by the entrants. Joshua really enjoyed that part and remembered to bring his own bag this year. This was Abby's first real outing that wasn't to an appt., other than an appearance at her shower the weekend before. She looked very cute in her patriotic dress and never left her carseat which was in the stroller. She was covered by a blanket the whole time and she slept through the entire thing. But it was nice to get out as an entire family. Joshua wore a t shirt he painted with potato prints. Then later in the afternoon Mark and Joshua went to see Wall-E. We finished the day by bar-b-queing brats, having watermelon and making homemade vanilla ice cream. No fireworks this year. It's hard to wait up until 10 when it's finally dark enough to see them.

What A Night!

Oh my goodness, I'm so tired. For various reasons we didn't get to bed until midnight. My alarm was to go off at 4 am to feed Abby, but her monitor sounded off at 3:30. No problem. I went in to check on it, expecting it to either correct itself or that I'd need to reposition her cannula. However, the monitor's readout said PRB. I thought it meant problem. It really meant probe, but when I tried to turn off the machine and start it back up that didn't get rid of the problem. Neither did removing the cable and then reinserting it. So the thing is now going to keep alarming and not show me what her saturation level is. I turn it off then I get on the phone to Praxair, the supply company, to get ahold of their on call guy. 15 minutes go by without a call, so I call them back. They say that he's replied to them saying that he got the page. So we wait some more for him to call. I'm hoping he can just tell me how to reset the machine myself. In the mean time, I go down stairs to use the bathroom so I won't disturb everyone upstairs should the phone ring. Well, the dog must have had an upset stomach because she's left some presents down on the family room floor. Great! I go back upstairs and the bathroom light is on. Mark's up. So we go down and clean up the carpet. Thankfully we have a steamer. A must with dogs and young children. Then back upstairs to wait. We're assuming that the guy has decided to head out to the house. The company is about 12 miles north, so he probably lives north of us too. Now Abby's waking up and is ready to eat, so I feed her while Mark waits up for the guy. By this time I try turning the machine back on and it's working again. I'm thinking the guy is probably on his way and should be here anytime now so I don't want to call and tell them everything's okay, never mind. Plus, this machine has been acting up every now and then and I'd rather just replace it with a new one. Too much time has gone by now, and I'd really like to get back to bed, so I call the company again. They transfer me to someone else who apologizes that the service guy hasn't called me back yet. They'll call him and have him give me a call. Finally he calls. Sounds like he just woke up. Guess he didn't think it was a big deal that our monitor doesn't work. By this time it's about 5:30. Mark's going to stay up because it almost time for him to get up anyways. The monitor is working now, so I tell the guy that he can come out later in the day to replace it. Then I crawl back into bed for another hour or so.

The thing that people don't seem to get is that when we're sleeping we really depend upon the monitor. Most of the time her saturation is just fine, but she has a tendency to rub her face a lot, and it's very easy for the cannula to come out and sometimes it will end up on top of her nose. Without the cannula in she desaturates very quickly. Without the monitor to let us know what's happening she could be in very serious trouble in just a matter of minutes. Needless to say it was very frustrating and I should probably follow up with the company with a complaint or something.

Now it's almost noon and everything is okay. I'm tired and I'm sure Mark is dragging. He also has a very long day today. Poor guy. Hopefully he can get some good sleep tonight.

A Shower

On Saturday our friend Jolene, along with other friends from church threw a shower for us. We brought Abby for the first little bit to show her off. We had gals there from church, MOPS and Jolene's mom and sister. It was fun to share our little sweetie with people who have been praying for her and us through all of this. In addition to the fun gifts we also received quite a few walmart and target gift cards. Those will come in very handy when we have to start buying Abby's formula. She has a specific type for low birth weight babies, so I can't just pick up the cheapest stuff.


The pictures I'm downloading are of Abby sitting in her new bumbo chair. She loves to sit up on my lap and with this little seat she can sit up on her own. It was one of her gifts, and there is also a tray for when she has a little more hand coordination. Hopefully she'll like that part too. The other photo is the play mat that she also received at the shower.


So tonight would be a good time to start writing some thank you notes. I'm behind from some other gifts we've already received. I've tried pretty hard to keep up with thank yous, but every now and then I get behind. During this whole experience we've received quite a few surprises in the mail. While she was still in the hospital the Visa and gas cards were really helpful with all of the extra miles I was driving-70 round trip. It's so nice to have that behind me. We've been blessed by many wonderful people, some we don't even know. I'm sure we'll be able to pass on the generosity some time in the future to other families in crisis.

Pediatrician Appointments

Abby's pediatrician is named Jennifer Gilsoul. She was recommended by one of the neonatologists down at the U. The office is only about 5-10 minutes away from home. She's been great so far. Abby weighed in at 12 lbs 3 oz a week ago Tuesday when we took her in. This wasn't a regularly scheduled appt. She hadn't been eating well for the past week. Thankfully she was still gaining more than an ounce a day, but something is going on. She's been gradually eating better, but today she's off again. We'll see what kind of weight gain she's been having at her next appt.

Even though she was born at 1 lb 6 oz they still want her to get onto the chart that other 7 month babies are on. She only needs to get in the 5th percentile, but still, this seems like a crazy goal. Joshua, who was full term and born at 6 lbs 4 oz was in the 5th percentile or not even on the chart at times his entire first year. She's actually only 1 1/2 lbs behind at this point, but we'll see how long it takes to get her there.


A couple of days have passed since I started this post, and we had our appt. this morning. Abby only put on a few ounces, but otherwise seems fine. She's still not eating great. I only have 3 more bags of breastmilk out in the freezer. Boohoo! Then it's fulltime formula for the little girl. We'll see how she does with that. She's now 23 inches long and 12 lbs 6 ounces. Her diaper was actually dry this time so it's probably a more accurate weight than the last few. She'll go back again in another 3-4 weeks for a weight check.

Dr. Appointments

Since Abby came home last month we've been back down to PCMC 3xs to see specialists. We've seen the cardiologist, opthamologist and pulmonologist. She's also been to the pediatrician 3xs with another visit coming up on Monday.

The cardiologist appt. was to address her mild case of pulmonary hypertension. He felt she would be better served seeing a pulmonologist. The pulmonologist prescribed a Flovent inhaler for her 2x/day. Hopefully this will help her get off of the oxygen a little earlier. It is also supposed to give her an extra layer of protection incase she's exposed to a virus again. We're hoping she'll be off oxygen by Christmas. It will be amazing to not have her attached to anything.


The opthamologist cleared her of all signs of ROP (retinopathy of prematurity). She'll see him again, along with many other specialists, when she has her neonatal follow up in mid-August. This will be up in Ogden and she will probably have 3 or 4 appt. over the next few years. They will do a complete overview, then make any recommendations for further treatments.

A Little Overview

So, it's been forever since I've posted any updates on Abby. It's been pretty crazy around here, but seems to be settling down. A little recap here: Abby came home from the UMC NBICU on Saturday, May 3rd on oxygen support. She was using between 1/2 and 1/4 liter of pressure. She was doing well until she picked up Joshua's cold. On Wednesday, May 14th she was admitted to Primary Children's Medical Center with an upper respiratory tract infection called Human Metapneumovirus. PCMC is right next door to UMC, so it was back down to Salt Lake we went. I had taken her into the pediatrician that afternoon and after listening to her and doing an xray it was decided that she needed to be admitted. It's 35 miles away and they didn't want to risk her quickly deteriorating while in the car with me stuck in traffic, so we took the ambulance down.

While there she was taken to the PICU (pediatric ICU) for a week. She was put back on the high flow machine at 8 liters and 80% oxygen. This was incredibly high, but she seemed stable so they didn't want to cause more damage to her lungs by reintubating her or putting her on cpap. She was then taken back to the infant unit for another week as she slowly reduced her oxygen needs. She came home on Friday, May 30th at .4 Liters of flow. While in the hospital she was given multiple i.v.s, poked by so many needles to draw blood, they tried twice to no avail to put in a catheter to run a urine culture. It was really rough seeing her put through all of this. She definitely was unhappy with all of these tests. Oh, and the suctioning! They would actually put a vacuum tube down her nose several inches to do what is called deep suction. This was done repeatedly, especially for the first several days. No wonder she had trouble breathing. In addition to her congested lungs this had to have swollen her nasal passages. I felt so sorry for her. We don't want this to happen again if we can avoid it. Therefore, she's pretty much housebound for the next year.

The Beginning

I've decided to set up this blog to record our experiences and feelings as Abby grows and develops. Our church set up an initial webpage for us, but now that she's home it's time to set up our own personal blog. Hopefully we can keep you updated on the entire family and include more photos too.

What I'll probably do is write shorter posts with specific titles, perhaps several in a day, rather than write one long, drawn out post. So this is the end of this one.