Wednesday, December 30, 2009
Happy New Years!
Monday, December 28, 2009
Christmas morning we had Pam's family and my parents over for breakfast. Santa skipped our house this year since we knew Riley would be overly spoiled by the rest of the family. Once she is old enough to understand it all we'll probably ask him to start coming by, haha. We hung out here after breakfast and opened presents and played a little Wii. Then we headed over to my parents' house in the afternoon for dinner and presents with all of my side of the family. And just as expected Riley was spoiled and got all kinds of wonderful toys, clothes, books, etc. Thank you to everyone for the great presents!!
Saturday, I spent the morning working with my brother-in-law in the basement getting the bar finished while my sister and her kids hung out with Riley and Pam upstairs. Makena read Riley books and Landon was elated to get to hold her for the first time. We went down the street to the Erwin's house to celebrate Koelton's 1st birthday that afternoon (Happy Birthday K-Man!), and then headed back to my parents house in the afternoon for the "big" Skach family Christmas. Unfortunately it was a much smaller gathering than most years due to the weather and other travel issues that kept all the out-of-towners from coming. We still had a good time though hanging out with everyone and playing games. And of course, everyone was thrilled to see Riley and she enjoyed meeting more family members.
I'm off work this week, burning some vacation time at home. Hoping to get some projects done around the house but so far after Day 1, the only thing I've accomplished is setting some new high scores on Wii. Oh well, still have a few more days. Tomorrow Riley has an appointment with the pediatrician to check her weight. Hopefully she will have gained a little bit, but either way there's a good chance he'll have us add some formula to her diet to help boost the calorie intake and therefore help the weight gain. Need to get her packing on the pounds like before so we can get her off the oxygen!
Thursday Riley will get to celebrate her first New Year's Eve. We decided to stay in again this year rather than carting her out anywhere. So if you aren't doing anything, come on over! Looks like we'll have the "usual" crowd hanging out here, and now that I have the bar downstairs done it really helps with the gatherings.
I'm guessing this will be my last post of the year, so I spent some time reading back through everything I have written so far. Hard to believe this is my 70th post. But going back to the beginning it is amazing how far we have come since our tiny, fragile, delicate gift from God came into our lives and changed us forever. 12 months ago, we had just found out we were pregnant and were trying to keep it from everyone while we figured out how to tell our families. Who would have thought 1 year later we would be the parents of a 7-month old. Despite everything, I wouldn't change a single thing and am so grateful for everything that has happened this year. 6500 visitors in less than 7 months shows how much love and support we have out there, and for that I am truly grateful. I know that without all of you, we couldn't have gotten through everything okay. I hope you all have had a great year as well, and wish everyone the best in 2010. Thank you for being a part of our journey this year and please stick around for the ride next year.
On a side note, I encourage everyone to click on the "Journey to Me" blog link to the right. Please keep Heather Moore and her son Eli in your prayers. Although a few years apart, Heather and I grew up across the street from each other. Her son is only a month old but is fighting through some major health issues and desperately needs God's intervention. Check out her blog for their story.
Also to the right are links to my Facebook photo albums. You don't have to be a Facebook member to view them, so browse through and check them out since I don't post very many photos on here.
Here's a few photos from this past week...
Asleep in her swing...it never fails, if she is being fussy and won't calm down we can put her in there and she'll fall right asleep. Best babysitter ever!
Happy baby in her Christmas outfit. She's really smiling a lot lately, and every time is better than the last. Love it!
Monday, December 21, 2009
She also had a follow up vision screening last week, and passed with flying colors. We'll have to go back in 6 months (and probably every 6-12 months throughout her childhood). No more appointments this week, and only one planned next week is the pediatrician to check her weight and discuss adding formula to her diet to help with calorie intake. We've also been mixing in a bit of rice cereal to get her used to having stuff in her mouth. She seems to do okay with it and actually swallow it sometimes not just play with it.
Pam was told she didn't have to serve out her remaining two weeks at work, so she's started her SAHM (I guess that's the acronym for Stay-At-Home-Mom) status sooner than planned. She's been keeping busy with Riley and today even got lots of holiday baking done. This next two weeks should be fun for us. Already had one Christmas on Saturday night, since Pam's sister-in-law and nephew will be out of town when her family gathers at our house on Christmas morning. We'll head over to my parent's Friday afternoon, then back over there again on Saturday for the extended Skach family Christmas. Will be exciting for everyone to see Riley, some were able to see her in the hospital but many haven't ever met her. Then next week I'm taking some vacation time so will be able to hang out at home all week with my two ladies. Hope to get some projects done around the house, and get some good relaxation in. Then we'll get to celebrate our first New Year's Eve as parents! I'm told that usually results in going to bed before midnight, but we're hoping to keep that from happening.
We took our Christmas photos last week, and finally got our cards out in the mail today...after many takes (never realized how hard it is to get 2 adults, 1 baby, and a dog to all look and smile at the same time) this was our best shot:
Also included with our cards this year, Pam finally got Riley's birth announcements done and included them. I think they turned out great! Being married to a graphic designer really has its perks sometimes...
Here's another cute one from the yesterday. Riley doesn't enjoy laying down anymore, but loves to sit up and check out the world around her. She'll sit there and look around wide-eyed for long stretches of time. Can't wait to see what her inquisitive mind does once she becomes mobile.
Sunday, December 13, 2009
No major appointments this past week, but coming up on Tuesday is the one we've been looking forward to for awhile - Dr. Riva, the pulmonary specialist. We are hoping that she will tell us we are done with the oxygen and the saturation monitor. It is likely we will still need it part of the time, probably during the night and maybe feedings as well, but we'll find out for sure in a few days. On Wednesday, she has a follow-up with Dr. Whitfil, the eye doctor. Because she has been on oxygen so long, there is still the posibility of retinal damage, but unlikely because of the low levels she has been on - plus throughout her NICU stay she had several tests and always passed with flying colors, so we are expecting positive results there as well.
Riley's been getting out and seeing more of the world these past few weeks. We've taken her shopping a few times, but have done our best to keep her from being exposed to too much. She has also been to a few more of my basketball games, and really seems to enjoy all the lights, sounds, and action.
I'll try to post again later this week after the appointments, with hopefully some very good news. In the meantime, here's this month's "Riley and Baxter" photo...she hasn't gained much weight, but is definitely getting longer!
Wednesday, December 2, 2009
Yesterday was Riley's BAER hearing test. It was supposed to get done before she left the hospital, but kept getting delayed. They had to sedate her to do it, so it made for an interesting day for Pam and Riley. They had to get there at 7:45am, even though the appointment was at 9am, and didn't end up leaving until 2pm - and Riley wasn't able to eat the entire time! Just like her Daddy, it took a whole lot to knock her out, and even then she woke up during one of the last tests so they weren't able to get all the results they wanted. They want to see her again in 6 months just to make sure she continues to do okay.
Tomorrow morning is her 6-month appt with Dr. Nichols, the pediatrician. I think she'll be getting her 6 month shots, and another round of RSV. Hopefully they'll be able to help with some of the feeding problems we've been having. Latest issue is Riley's hatred of the bottle. She'll be doing just fine, but as soon as the bottle touches her lips she starts screaming. Made feeding time not very fun, and she's not eating near as much as she should since she fights it so much.
Not much else to tell, but wanted to make sure we recognized this great milestone. Only 6 more months and we can throw a big party!
Sunday, November 29, 2009
Today we (finally) had Riley's Baptism. We would have like to have done it sooner, but for obvious reasons it took awhile to get around to it. My younger brother and sister, Michael and Jill, are now officially her Godparents. Thank you to everyone who were able to attend and help celebrate the occasion. Despite having tons of visitors and all kinds of attention, she did very well. One of the gifts we received was from Pam's mom and sister - a professionally bound book with photos and excerpts from this blog! It is really neat, and helps tell Riley's story and documents her amazing journey. Very touching...
Pam and Riley did pretty well without me during my trip to St. Louis the week before last. 4 days alone with each other, I figured Pam would have gone insane but managed to hold it together. Next week starts a new chapter in our attempt to return to life as normal, as Pam is going to return to work a few days a week. My mom has graciously offered to come over on Mon/Wed/Fri to watch Riley so Pam can phase herself back in at McCurdy.
Rainbows hasn't been out in a few weeks to work with her, as the therapist was sick the week before last and then the holiday created another week off. This coming week she'll have them out here, along with an appointment to see the pediatrician and get her 6 month shots. She has been progressing well, but feedings have become a bigger pain - she isn't fussing near as much but even though she is "sucking", she still barely manages to get 3 oz. down in 30-45 minutes. She has also started to throw up a lot more - usually a few times a day. Given that I had a hiatal hernia as an infant, and threw up just about every feeding, this is de-ja-vu for my mom! Hopefully the speech therapist and/or pediatrician will be able to help with this, since her weight gain has slowed down quite a bit. She has started to roll a little bit more, and is smiling a lot. It is very rewarding when playing and talking with her to get a little smirk or grin - but we've already figured out it is nearly impossible to catch it with the camera! Have been lucky to catch a few, but none of the "really good" ones.
Friday was Pam's 28th birthday, so we finally got her out on the town for the first time in awhile. She even had a few "adult beverages" - her first since before last Christmas! Pam's mom and sister babysat Riley so we could get out of the house and we are very grateful, Pam really enjoyed getting out for a bit.
This Wednesday (Dec 2nd), Riley will be 6 months old. We are parents of a 6 month old. Riley is halfway to 1 year old. How is this possible? Has it really been that long? In a few weeks, it will be a year since we got pregnant. Wow, life has really changed in the last 12 months. We have grown so much as people, as a couple, and as a family. And we have the gray hairs to prove it, haha!
Here's a few pictures from Thanksgiving and Baptism...check out more at this link:
All smiles lately! She's learned Mommy and Daddy's voices and lights up when she hears them.
Me and Riley with her cousins Landon and Makena at Thanksgiving...all 3 Skach grandkids!
Getting baptized by Fr. Orr
So cute in her baptism dress. She did real well and didn't cry at all!
Godparents Michael and Jill with Riley at Baptism.
With my parents and Pam's mom at the Baptism.
Sunday, November 15, 2009
Riley got her first RSV shot this week, handled it pretty well too. We were expecting her to at least be a little fussy, or something, but it was business as usual for her the rest of the day. Rainbows came out a few times again this week, gave a few tips to Pam to help the feedings. Trying a few different things since Riley can still be a real pain when eating sometimes. I've all but given up on giving her bottles myself, its become more evident that only Pam has the touch.
This next week will be a challenging one for us. I'll be gone on a business trip from Tuesday to Friday, so Pam and Riley will be all alone for 4 days/3 nights. Other than another Rainbows appointment on Wednesday, should be a pretty uneventful week for her - and luckily we have tons of friends and family closeby should Pam need anything. And with snow looming over us the first part of the week, I'm sure Pam won't mind being stuck inside the whole time.
We did finally set Riley's Baptism date - will be Nov 29th, the Sunday after Thanksgiving, at Resurrection Catholic Church here in Wichita. It will be immediately after the 11am mass, and everyone is welcome. Afterwards, we are probably going to have some sort of small reception at our house for the family. My brother and sister, Michael and Jill, will be Riley's Godparents.
I know I like to throw out dates and milestones, but here's another one for you - 6 months. It's been that long since Pam's water first broke and this whole adventure first started. It's been such an eventful half-year, I can't imagine what the next 6 months will hold...
Pam's been wanting to create birth annoucements (yes, just a little late), so she took a few black-and-white photos for a design she was working on. Here's a few of the best ones...
Sunday, November 8, 2009
Halloween weekend was a fun one for us. Started off on Friday with some trick-or-treating at my office. We have a tradition where all the employees bring in their kids (and grandkids, etc.) to try and score some free candy from all of us, so after some begging from a few in the office we decided to go ahead and bring Riley in. Kept her in my office and didn't take her around to everyone in the building to keep from exposing her to too much, but everyone got to poke their head in and meet the little miracle they've all heard so much about. Didn't do much on Saturday (Halloween day) since she is still a little young to actually hunt for any candy - and no, we didn't really have a costume for her, just a cute jack-o-lantern onesie (see below) for her to wear. Sunday (Nov 1st) was my dad's birthday, and also our turn to take the gifts up at Church so we opted to take Riley to Resurrection for the first time and had my parents tag along to help escort us up. I didn't get a good picture of Riley in her Sunday dress, as we were rushed both before and after mass. She did really well during Church though, in fact slept through the entire thing.
After Church, we took a calculated risk and decided to bring her to my basketball game as well. There usually aren't very many people there, and she stayed in her stroller the whole time so it turned into a great opportunity to get her and Pam out of the house. She was good luck for me too, as I hit my first 4 3-pointers with my little inspiration in attendance! We ended up losing, but that's not very uncommon for us...
This week was a little less eventful - only thing to report on was her follow-up with Wesley's OT/PT department. Somewhat redundant with the PT she is receiving from Rainbows, but they worked with her a little more and gave us some more exercises to do with her to try and loosen up the stiffness in her legs and arms. They also said to increase the amount of "tummy time" and work to keep her on the back of her head more, so we bought a special head pillow (looks like a donut) to try and prevent her head from going to one side or the other while she sleeps.
Next week, we have two more appointments with Rainbows, both PT and Speech therapy (bottling) coming out to work with her. After that, nothing until December. We are going to try and schedule her baptism for the Sunday after Thanksgiving, but haven't talked to the Church yet.
On Monday (Nov 2nd), Riley hit 5 months old. I know I say this with every milestone, but WOW! I can't believe it has been 5 months already. Also, yesterday was exactly 1 month since we finally got to bring our angel home. Looking at this blog, 63 posts so far and over 5700 visitors, it is amazing how much support has been generated by this website. I started it as a way to keep from sending out mass emails to my family, and slowly it has made its way to so many people. It has helped me keep my sanity throughout the ordeal, forced me to pay more attention and ask more questions when speaking with the medical staff, and really been a stress reliever more than anything. I hope you all have enjoyed reading it as much as I have enjoyed typing it. I'm thinking of printing out all these posts into a book for Riley, and when she is a teenager and mouthing off we will have some leverage to remind her how much we have gone through for her, haha!
Here's a few pics from the past two weeks:
Happy Riley! She's starting to smile every once in awhile...hoping to see more and more of it and she grows
Riley and big brother Baxter going on their first walk together.
Riley looking festive in her Halloween outfit. Not a great pic, but she wasn't wanting to hold still for this one.
After another bath...looking so cute without the oxygen! Hopefully only another month before we can look like this all the time.
As promised, here's Riley with Baxter again. Hasn't grown a whole lot in the last month, up to a little over 12 pounds.
To view even more photos, check out these two albums on my facebook (you don't have to be a facebook member to view):
Riley Alexis Skach (photos during her hospital stay)
Riley - album #2 (photos since she came home)
Sunday, October 25, 2009
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 it...plus 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
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 time...so cute without those darn tubes and patches!
Monday, October 12, 2009
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
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
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 "HowsYourBaby.com" 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
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
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...
Monday, September 28, 2009
Since her feedings have been stopped, they went ahead and removed the feeding tube - it was only a matter of time before she pulled it out again anyways. When she slept today, she was pretty calm and even had the cannulas out for a short time - which meant for the first time ever she had NOTHING on her face! Unfortunately, she was lying on her stomach and Pam couldn't get a good picture of it. Getting her to stay calm and asleep has been the challenge today, however, since she has been constantly hungry and fussy. Pam spent just about the entire day up there so she could soothe her and hold her to keep her from fidgeting and pulling the IV out and crying all day.
Hopefully she will rebound quickly from this like she has everything else, but its put off any plans to get the feedings going and get her home. Doesn't look like she'll be home by the end of the month, and we'll be celebrating her 4 month birthday in the hospital. Keep her in your prayers, they've been working but we can always use more.
Sunday, September 27, 2009
They've made some changes to her feedings to try to push her along. She was moved to 100% breast milk early in the week, and given vitamins in place of the formula. Then they moved her feedings down to 75mL (from 86mL) in an effort to get her hungry for each feeding, since half the time she would still be sleeping and content when it was time to eat again - which kept her from being interested in a bottle. Because of the reduction in her milk intake, they swapped out 2 feedings a day with straight formula to make up for the missed nutrients. We noticed yesterday though that she has had some bloody stool, so they discontinued the Neosure (formula). They said it can be harder to digest, so after a KUB (GI tract x-ray) they determined the Neosure was the likely culprit and not anything more serious. She has been on formula before, but not this kind and it was always mixed in with milk. No word yet if they will bring it back mixed with milk or not. But just since cutting the Neosure out this morning, we have noticed her stools improving.
The move to 100% milk has slowed her weight gain a bit. She's been hovering around 10lb 6oz all week long, which is perfectly fine with us since she has turned into quite the chubster. She had her follow-up MRI on Tuesday, and passed with flying colors. Her BAER (2nd round of hearing tests) were scheduled for right after it, but she was too fidgety and irritable for them to do it so it has been rescheduled for this next week. Dr. Shah (neurologist) has her follow-up EEG scheduled for this week as well. She is 117 days old today, which means in 3 days she gets her 4-month immunizations. The nurses have been joking that they don't ever have to do 4-month shots there...guess that means we need to hurry up and go home! We took the infant CPR class on Wednesday night, and are supposed to be getting the monitor/oxygen training sometime this next week as well.
Speaking of oxygen, she has been improving in this area as well. She hasn't been needing a whole lot, and there have been times that she is sleeping so well that they have turned the O2 down all the way and she was still high so they took the cannulas out of her nose for up to 30 minutes. It has given us some hope that when she comes home she may only need the oxygen at feedings and at night. She did have a 5-day stretch with not apnea/bradycardia episodes either, but after noticing it we must have jinxed it because she had a few the next day. If she can go about 7 days, she might not have to come home on the apnea monitor after all.
Since Pam is the only one who has had a lot of success with getting Riley to feed, there has been talk of maybe getting her to stay in the hospital for a day or so to try and do every feeding. If we are able to do this, it would likely move us into that "24 hours without the feeding tube" window that we need to come home. We don't want to rush it, but if Pam can be successful with it and she will be the primary one feeding her at home anyways, it just makes sense.
Here's one of the times she had the cannulas out. Best shot of her face sans tubes yet!
Sunday, September 20, 2009
The past few days have been pretty exciting for us. They've been trying to bottle feed her at just about every feeding, and slowly she's getting better and better. Today she took about 60% of her feedings completely from the bottle. Breastfeeding is a little slower going, since it isn't as easy to fight her as it is with the bottle. It wears her out quicker so when she has to stop, they finish it with the feeding tube. Once she can make it 24 hours without needing the feeding tube, they will remove it, and if she goes another 24 hours on the bottles/breast then she'll be ready to move out! At that point we'll move to a family care room to spend a night or two with her and after that its home bound. Not sure how long this will take, but my best guess is still "about a week or so".
She passed her hearing test today, but will get a second one in a couple days (they do an additional, more in-depth one with preemies). She is also getting an MRI on her head on Monday or Tuesday, a follow-up from the one she had back in June to check the hemorrhaging she was having. She hasn't had any apnea/bradycardia spells in over 4 days now (a new record for her), so they took her off the caffeine supplements. Her breathing has been really good, but still a little erratic and requiring some slight O2 adjustments here and there.
When Riley does come home, we're pretty certain she won't be in any danger of starving. Pam has been pumping since the birth, and since Riley has been on 50% formula and not even eating as much as Pam was getting, we've been storing a ton of milk. Latest count puts at over 600 (yes, I said 600) bottles of milk (4oz each). So that's around 2500oz of milk. Can someone please tell me how long it will take her to drink all that? Not sure how quickly her intake will increase, so we've been discussing how long we think this would last, even if Pam quit pumping and didn't breast-feed. Just playing devil's advocate here, but I'm curious...
Pam's mom did get her turn to hold Riley on Thursday. Here's a picture of Riley with Grandma Peggy Bearth for the first time...
I'm still learning, and haven't had the luck that Pam has, but here is my first attempt at bottle-feeding Riley. She seems to want to fight me a little more than she does Mommy...I'll get the touch eventually I hope.
Just like most babies, she's still preferring being held to laying in the crib. After just about every feeding, we've been holding her while she goes to sleep. She's gotten big enough we can hold her up on our shoulder now rather than just cradling her. She seems to prefer this, I'm guessing because she is on her stomach which she's always liked better. Here's her with Mommy after getting a full belly.
Wednesday, September 16, 2009
Also Monday night, we had another first. Riley has gotten big enough and stable enough, that the nurses told us we could let others hold her (at our discretion). We're going to keep it very limited, but decided to let the Grandma's go first. My Mom came to visit Monday night so after Riley's feeding she was doing really good and was tired, so we let Grandma Skach hold her for the first time. She was SO excited and couldn't stop gushing! Riley did great, and loved Grandma holding her. Here's their first photo together...
On Tuesday it was Pam's mom's turn to hold her, but since John and Emily were visiting for the last time until John ships out to Korea for a year, she decided to let John hold her instead. She's been begging to hold her for so long, so I know it was a huge sacrifice. They both did great, and Riley really enjoyed being held. It's becoming obvious that she can't stand lying in bed, and always wants to be in some one's arms. We wish John all the best, and I know everyone will be praying for him while he serves our country over seas. Here's proud Uncle John with his niece.
Also on Tuesday, they informed us that it was time for Riley to be moving upstairs, as we had been expecting any day. We figured it would happen sometime last night, but didn't get the call until this morning. She moved upstairs at about 3:30am into a satellite room in the Special Care Nursery on the 3rd floor of Wesley (just above the NICU). It's a little different setup than the NICU with different rules and regulations. It is a converted normal hospital room, with 3 babies and 1 nurse that never leaves the room. Ironically, one of Riley's roommates shares her name, but it's a boy. The visiting hours are more open (8:30am-8:30pm), but we can only have a total of 2 people instead of 4. So if anyone wants to come up with us, only 1 of us and 1 visitor can go in at a time, which isn't very convenient. As a result, we probably won't bring very many visitors up now until Riley comes home. Here's a picture of her new digs, with Mommy holding her next to her bed.
Today Pam got to try breast-feeding for the first time. Has done it 3 times now, and each time it gets better and better. It will be a little while before she takes to it fully, but its a learning process for both Pam and Riley. The nurses are trying to give her bottles as much as possible when Pam isn't there, but she's still getting a good chunk of her feedings through the NG tube. Her last step to complete in order to come home will be to take 100% of her feedings through bottle/breast and no more feeding tube. It will likely take at least a week for her to get to this stage, so our hope will be to bring her home sometime next week, or by the end of September at the latest. No doubt she'll still be on the oxygen when she comes home, as she has some pretty consistent O2 needs the majority of the time. She's still gaining weight every day, up to around 9lb 9oz now. She's looking cuter and cuter every day as well, and seems to have the best of each of our qualities. Here's a good closeup of her sleeping today...
This has been such a long and emotional ordeal for our entire family. It is so wonderful to see the light and the end of the tunnel, and we can't wait to finally bring our angel home. I want to thank each and every one of you that have touched our lives and helped us in so many ways over the past 4 months. Looking at the bottom of this page, over 4,100 people have visited this site, followed Riley's progress, left us wonderful words of wisdom, and sent their thoughts and prayers our way. Pam and I are so amazingly blessed to have this shower of love around us, much of it from people we don't even know. This support has given us such strength, and we couldn't have gotten through it without all of you. Once we bring her home, a whole new adventure will start and we look forward to sharing it with everyone. We attended the baptism class at church last night, and plan to welcome Riley into the Catholic Church soon after she comes home. I'll post more information as the date approaches.
So for now, our concentration will be to keep Riley moving forward on her feedings. This likely means that we'll be up at the hospital even more. Pam has already started making plans to be there 3-4 times a day so she can breast-feed as much as possible. I'll make my usual evening trips after work, and lunch visits if I am in town. Keep checking back, I'll probably post another update this weekend, with pics of Pam's mom when she gets to hold Riley for the first time on Thursday.