Sunday, October 25, 2009

Riley-head the bobble-head

Another week down at home at things are still going great. I'm not kidding when I say she really is an easy baby! Of course everyone keeps reminding me that it will surely change at some point. This week she has been sleeping great at night, going around 7 hours almost every night. Really makes it easy on both of us, allowing us to get good sleep. During the day she is awake about half the time, and usually does pretty good just looking around, staring at different things (the ceiling fan and the painting on our wall, mostly). Her nickname has become "Riley-head the bobble-head" because of her wobbly neck as she is trying to hold her head up and look around. She's getting real good at it, but can only hold if for seconds before flopping over. She gets fussy every once in awhile, which seems that she already has us trained to answer her whimpers by picking her up and giving the pacifier, which she really loves. Bottling is still hit and miss, sometimes she does great and others she really fights and fusses. Her cries are slowly getting louder, as her vocal cords catch up to where they should be at this age, but still pretty hoarse.

Rainbows United came to see Riley this week. For those of you that aren't familiar with them, they are a non-profit organization, mostly funded by government grants and donations from the United Way. We were set up with them from the beginning so they can help follow her developmental progress once she came home. On Wednesday, one lady came by to do paperwork and on Thursday they sent a speech therapist (who also handles bottling), a physical/occupational therapist, and another PT student. After observing her for a little while, they said they would like to continue seeing her on a regular basis, here in our home. She is doing great, but does have some stiffness in her legs and some other slight physical development issues that they will help her work through. As time goes on, they will do other tests to make sure mental development stays on track too. If need be, we'll be set up with them through 3 years old, free of charge.

We took a huge step tonight, and left her with my parents while we got to go out to dinner - a first for us since she came home. Since she has been so easy to take care of, and most of our concerns of any major issues happening have been calmed, we figured now was a good time to try I was REALLY craving some Red Robin burgers, fries, and milkshake all week!

Next week we're going to try a few more things...might take her to my office on Friday for family trick-or-treating in the afternoon. Don't really want to get her around lots of people (and therefore germs), but figure if we do take her, we can stick her in my office and people can poke their head in...don't need lots of people too close or any kids, but I know tons of people are wanting to see her. Jury's still out on whether we will do it or not though. Then on Sunday, we are scheduled to take the gifts up at Church. I've been going to church alone on Sundays, while Pam stays home with Riley, but we might use this as our trial to see how she does in Church so we can have her baptized next month. Again, we really don't want to get her around a lot of people, but we can sit in the back corner where not a lot of people sit so shouldn't have as many worries.

Sorry, don't have any new pictures to post. Only took a few this week, but none that were any good. Will try and get some up by next weekend, will have to get a few of Riley in her Halloween outfit! Thank you again to all who have continued to follow Riley's progress and send their kindness in so many ways.

Tuesday, October 20, 2009

20 weeks old

Sorry its been over a week since I posted, the evenings have just been going by too quickly and I haven't taken the time. Last Tuesday, we went to see Dr. Riva, the pulmonary specialist. Didn't find out too much new information, but she did say that she didn't foresee any long-term problems with Riley, other than her likelihood to have asthma and be prone to lung disorders as a youngster. She also told us we could shut the monitor off during the day. We turned up her O2 level a bit, as Dr. Riva said she would rather her saturation be high all the time, than occasionally dipping low as it did on the lower setting. Since the monitor misfires more than anything when she is awake and active, she said we are a better monitor than the machine. So as a result, we only need it when we "aren't paying attention" (i.e. when we are sleeping). We will go back in two months to see her and hopefully be able to get rid of the oxygen.

Life at home as been pretty good. She is sleeping well during the night, usually about 4-5 hours at a time - and even went over 6 hours twice this weekend. This has made it pretty easy on us, since we haven't had to be in that "sleep deprived" stage at all. During the day, Pam has found ways to keep Riley occupied in her bouncy seat and swing so she can get other tasks done (laundry, cleaning, pumping, etc.) She has loved laying on her stomach and has gotten real good at holding her head up and looking around. When she isn't being fussy, she'll spend a lot of time just looking around and taking it all in. She has even begun batting at the toys hanging in front of her in her seat. She turns exactly 20 weeks old today, which is about 4 1/2 months and is about 7 weeks "adjusted age". Given her situation, she has a lot of 4 month old traits and a lot of 1 month old traits. It's been fun seeing the balance.

We were able to go through all her clothes and diapers and return a bunch of stuff last week. Found a bunch of outfits that she had already outgrown, and were able to take back all the preemie and newborn diapers that weren't opened. She is already in size 1 diapers, and her clothes are a mix of Newborn and 0-3 months, depending on the brand. Looking at those preemie onesies that we had already opened and washed, they look like doll clothes! Guess we'll try and donate them to the hospital or something.

Yesterday, she even surprised us with another milestone. She rolled over! Pam had her on her stomach with her arms under her holding her up. At one point she kind of leaned to one side and fell to her back. Not sure if this counts as "rolling over" but we'll count it! Proud of her either way.

We also want to say a huge THANK YOU to my cousins Christal and Michelle for organizing the steady flow of home cooked meals for us, and to all our friends who volunteered to help as well. Not having to worry about what or when to eat has been a huge help, and we really appreciate it.
Here's a few pics from the past week...

Aunt Laura (Pam's sister) holding Riley for the first time.

Tummy time...she's gotten real good at holding her head up, such a strong neck!

After bath cute without those darn tubes and patches!

Grandpa holding Riley.

Monday, October 12, 2009

Adjusting to life with a baby at home

Five days and nights with Riley at home now and we are adjusting pretty well. Had tons of family and friends stopping by helping in various ways, which has really made the transition smooth. Every one's first question has been "Are you getting any sleep?" And actually, yes we are. Riley has slept really well at night, 4 to 5 hours at a time. The only tough part has been when she does wake up and eats. She still has trouble every once in awhile taking the bottle. She gets fussy and so hungry that she is too busy whining to latch on to the bottle. But there are also times when she sucks it down quickly and quietly. Just wish those times were the ones where I was trying to sleep...

Other than the occasional trouble feeding, everything has been pretty mild around here. We've tried to get into somewhat of a schedule with her. Today I went back to work and Pam was at home alone all day with her. She mastered the art of moving her from room to room with her monitor and oxygen in tow. We did have her first pediatrician visit this morning, and that was Pam's first true test at getting her out and about. She did great though, and when I met her at the doctor, she had everything figured out to haul her by herself. Dr. Nichols said she looks great and isn't concerned about anything developmentally. We hadn't really weighed her since she came home, so we were surprised to find out she was up to 11lb 6oz! She finally got her 4 month immunizations, and other than being a little fussy today seemed to handle them very well. She'll also be getting her RSV shots every month from November to March. Dr. Nichols said they will schedule a home health nurse to come to our house to give them, since he doesn't want her in his office any more than we have to - too many sick kids this winter. Tomorrow we have our follow up with Dr. Riva, the pulmonary specialist. Hopefully she will be able to answer some of our questions about Riley's lung development and how long she might be on the oxygen and monitor.

Here's a few photos from the last couple days...

Riley with Aunt Nikki, Uncle Eric, and cousins Makena and Landon (being shy) for the first time.

After her bath the other night, another great look at Riley's face without tubes!

Riley and big brother Baxter. This was a challenging photo to get, as neither of them wanted to hold still. Hoping to shoot this once a month to show how much she is growing.

Happy family! Mom, Dad, and Baby together at home...finally!

We passed 5000 visitors to this blog over the weekend. Wow! We are so blessed to have so many that care about Riley and want to follow her amazing journey.

Thursday, October 8, 2009

Home Sweet Home

It was almost surreal leaving the hospital, knowing that we wouldn't have to be back up there again to visit Riley. A whole bunch of firsts kept happening - her first elevator ride, her first time breathing outside air, her first car ride, etc. Such a crazy experience, and the most nervous drive I have ever made! But getting her home was so wonderfully rewarding. My parents were there to help us load up the stuff, take pictures, and settle in back at the house. We've already figured out that its going to be a chore taking her anywhere - lugging around the sat monitor and the oxygen tank - certainly a lot for one person. Our first night actually went pretty well. Riley slept good for the most part, and we aren't feeling sleep deprived this morning. I'm sure that won't last, but we'll take it while we can get it.

Here's a few pictures from our adventure home yesterday...

The Skach family, getting ready to head home.

Rollin' out, with all the equipment in tow.
Riley's first bottle at home.

Uncle Mike, Riley's Godfather, holding her for the first time.

Baxter hasn't really figured out that there's a new body in the house, but I know he will soon. He was pretty tuckered out when he got home and this morning has already shown more of an interest in his baby sister. Here's Riley meeting her big brother for the first time.

And now the real adventure begins. We're so glad you all have been there throughout this first chapter in Riley's life and can't wait to keep sharing in the rest of the story.

Wednesday, October 7, 2009

Last day at Wesley

It's official! We got the okay to leave here in a few hours and FINALLY take our baby home. 151 days, just short of 5 months since Pam first went into the hospital and gave us all the scare of our lives, we are taking a happy and healthy baby Riley home with us. We're just waiting for the hospital to finish up some paperwork and fill her prescriptions (Phenobarbital, Aldactazide, vitamins) and then we'll be packing the car up and rollin' out. We've already got appointments set up to have her immunizations and first pediatrician visit on Monday, the BAER hearing test done next week, meeting with the pulmonary specialist (Dr. Riva) next week, follow-up with Dr. Shah (neurologist) in 4 months, and eye exam in 6 months.

I forgot to mention this in the last post, but she did pass her car seat trial over the weekend. Once we were moved to the family care unit on Monday they told us the only thing keeping Riley from being discharged would be if she didn't gain weight. Given her history, we didn't think it would be a problem - but sure enough she failed to gain anything until 5am this morning, just in time! Still waiting to take the "" survey today too, not sure what that is but its one of the last things on our checklist. Met with Dr. Wadud, partners with Dr. Heflin, and he gave us the all-clear about an hour ago. So exciting!

Here's a view of our "hotel room" the past couple days...

And Grandpa (my dad, Jim) got to hold Riley for his first time. She really enjoyed it!

She has done a good job of sleeping the last couple nights, and been pretty awake during the day - a great schedule to have! Today she has been laying in her crib just looking up at her animals quite a bit, without fussing very much. Hope this "happiness" stays!

Sunday, October 4, 2009

Light at the end of the tunnel

Well folks, we can finally see the light at the end of the tunnel. It's been a really great weekend for Riley. Friday they moved her up to full feeds, then pretty much immediately moved her to "on demand" feeding - meaning SHE decides when she wants to eat, not the schedule. Basically, they give her a window to eat in, and whenever she wakes up and acts hungry she gets to eat, and depending on how much she takes determines how long the next window is. She has been eating around 100+ mL each time, which gives her the maximum 4 hour window before her next required feeding. She is getting better and better each time with the bottle as well. These bigger feedings have triggered more weight gain too, as she hit the 11 pound mark this weekend - which is kind of funny because she is officially "off the chart" (small conversion chart for grams to pounds on her clipboard only goes to 10lb 15oz). The nurses say that means they have to kick her out, haha.

Also on Friday, her care was transitioned from Dr. Hsiao (neonatologist) to Dr. Heflin (hospitalist), who will serve as the liaison to our pediatrician, Dr. Nichols until she goes home. Almost immediately, Dr. Heflin began making plans to get us into a family care room ASAP. We received our apnea monitor and oxygen training on Saturday morning, and today they adjusted her O2 settings to what they want them to be at home. They've already changed their mind on what monitor we'll be on, and how the O2 will be set twice today, so who knows exactly what it will be by the time we finally leave.

Today, Dr. Heflin informed us we are free to move to a family care room (a.k.a. mother-baby room) tomorrow morning. We will be there, just us and Riley in the room with a nurse on call if we need, so that we can learn to manage her care and use the new equipment just like we will need to at home. We're signed up for a 48 hour stay, which means we get to go home Wednesday! It's almost surreal to think that after all this time we are finally going to have our baby at home with us. Another week and it will be exactly 5 months since Pam went into the hospital and this whole ordeal started. Since then we have learned so much, grown a lot together, and been blessed to have such an outpouring of support from so many people. I know we couldn't have been as strong and gotten through this without all of that love and support.

She has been spending more and more time awake, which can be both a blessing and a curse. When awake, she needs attention and stimulation, so she's been spending a lot of time in her bouncy seat. She seems to really like it, staring up at her mobile or watching the animals that attach to the seat. But when she sleeps, she can be really sweet. Here's a great photo of her after we put her back in bed the other day. Gotta love that hand holding her face!

She has gotten really good at holding her head up and working her neck muscles. She likes being held with her chest on your shoulder looking out around the room. Here Riley is staring at Daddy and that annoying flashy thing he's always pointing at her.

Many have asked if we are going to have a big homecoming party or anything for Riley. Originally, we had planned to have a big reception at our house after her Baptism in the next few months, but after talking with the medical staff we don't think that a big party would be such a good idea. She is going to be at very high risk for flu and other infections, which would be very bad for her to get. So as a result, we won't be taking her anywhere this winter, and don't plan on getting her around any large crowds. Unfortunately, this also means we will have to be very selective and careful about letting people come over and/or hold her. So in advance, please do not be upset if we decline your request - it is just for the best interest of Riley. If you have even the slightest sign of a cold or anything else (sniffles, tickle in your throat, etc.), we ask that you do not come by - otherwise, we will try to welcome as many visitors as we can. By Springtime, her immune system should be built up better and we'll be out of the flu season, so we'll try to hold some sort of gathering at that time.

Thursday, October 1, 2009

Back on track

Looks like this is another situation of "we may never know". After many x-rays, blood cultures, stool cultures, and many other tests, they still haven't determined why she was having bloody stool or a dilated intestine. Yesterday her problems seemed to have ceased and everything had come back negative, so they decided to start her feedings back up. She'll be weaned back up to full feeds over a few days. She started with 30mL yesterday, and sucked the bottles down pretty fast each time. Today she moved up to 60mL and is doing good again. Hasn't taken every feeding by bottle, but basically back to where she was when this all began. Hopefully tomorrow she'll go up to 90mL which will get her back to full feedings. As they've moved the milk amount up, they have been weaning the TPN down. Will be good to get her feedings back to normal so we can get the IV out. She has pulled a few of them out again, which is not a good thing. Since the formula was the likely culprit for her latest issues, our guess is that she'll begin getting the vitamins again when the TPN is stopped instead of the formula for nutrient supplements.

Despite not getting any milk the last few days, she's still gaining weight. Tonight she was up to 4905 grams, or about 10lb 12oz. Her oxygen needs have continued to be real low, and down to room air when she is calm and sleeping. Yesterday they finally were able to do her follow-up EEG and we are happy to report it was "normal". There were no signs of abnormal electrical activity or seizures, so that means she can be weaned off the phenobarbital. They will slowly wean it down over 16 days, since cutting it cold-turkey would give her some major withdrawal. This is a huge thing for us, since once she has the feeding tube removed once and for all we would have to mix it in her milk. It has a very strong rubbing-alcohol taste to it, so very hard to take in a bottle. Will be nice to have it down to very little when we get to that point. She is due for another round of immunizations, but they chose to put it off until she's out of this latest phase of problems. Hope to get them in a few days, before we leave the hospital so that all the fussiness that usually follows will have to be handled by the nurses and not all of it by us, ha!

Pam is still able to get Riley to take her bottles better than anyone else, so she's spending quite a bit of time at the hospital. I think I said this a few posts ago, but we are going to look into having Pam stay at the hospital with Riley for a day or two to get her doing more bottle feedings. The nurses tend to hook up the feeding tube a lot quicker when we aren't there to work with her more on the bottle. They don't have the time to sit there for 30-40 minutes each feeding "fighting" Riley the whole time, where as Pam has the patience and the time to do just that. Depending on how that goes, we may be able to do that this weekend.

Haven't taken many pictures the last few days, but here's kind of a funny one of her during the EEG. They didn't even have to sedate her, and she slept right through it! And ironically, thanks to the diuretic, she had filled her diaper and was laying in a puddle of pee! She had soaked the bed, but yet wasn't even fussy. Check out all those wires on her head...poor little thing.

Also wanted to show this picture to everyone. Now that she is so big and doing so well, I can look back at this and realize how lucky we have been. I don't think at the time the severity of everything really hit us, as we did everything possible to remain positive. I recently got this picture from my sister, and it really opened my eyes. Check out how small she was, taken right after her birth, really gives you perspective:

Tomorrow, October 2nd, Riley will be 4 months old. Wow...can't believe how fast this has all gone by. Let's just hope she isn't still there at 5 months. But at this point, we quit trying to guess or hope for a particular date - just take it one day at a time and let Riley decide when she wants to come home. It will all be worth it soon enough...