Monday, September 28, 2009

Follow-up from the weekend

Riley is back to her old routine again...she takes a few steps forward, then another step back. This morning when Pam visited Riley, we got a little bad news. The bloody stool had come back, so Dr. Hsiao decided to cut the feedings off altogether. To make sure she still gets her nutrients, she is getting TPN feedings, which looks just like Mountain Dew or Gatorade through an IV, in addition to lipids (fat) in her IV as well. They are doing KUB's (GI x-ray) every 6 hours to check for problems, and have found her large intestine to be slightly dilated, which is causing the bleeding. It has been very loose and liquid, so it's been hard for them to get a sample to study, but the sample they did get came back negative for any bacteria, and confirmed the redness was indeed blood. In addition, her blood cultures have come back negative as well. They are thinking she could have some sort of virus, but haven't been able to confirm anything yet.

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

Another week down

Its been a pretty busy week for us, so I apologize for taking 7 days to post on here. Really not much has changed, but we've been spending a lot of time every night working with Riley on bottle and breast feeding. She's getting the hang of it, just not as quick as we would like. Pam can get her to finish whole bottles just about every time, but the nurses don't have quite the same luck. She does fight it quite a bit, she's usually pretty hungry but can't stay latched on. It takes patience, which is something Pam has a lot of.

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!

Chillin in her bouncy seat...
Wide awake with Mommy today after a feeding...

Sunday, September 20, 2009

10 pounds...and lots of bottles

Today Riley is 110 days old, and officially weighed in last night at 10lb 1oz. Wow...I never thought coming into this that we would be bringing home a 10 pound baby! Who knows, maybe she'll be 11 by the time she actually comes home.

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

Movin' on the 3rd floor!

Wow...seems like a whole lot longer than 3 days ago that I last posted. So much has happened! On Monday they did try bottle feeding, and Riley did great! Took about 56mL on the first try, a whole bottle (60mL) on the second, and when Pam got to do it for the first time Monday evening, she took an entire feeding (78mL)! She doesn't do so well laying on her back, but when "side-lined" (laying on her side towards you, like when breast-feeding), she does much better. Here's a picture of Pam feeding her, still awake after getting really full...

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.

Sunday, September 13, 2009

Swingin' Riley

Riley's continuing to make progress this weekend. On Saturday, they moved her to the low-flow nasal cannulas. She has done well on it, so today they started the bolus feedings (moved down to 30 minutes from 2 hours). She has been handling it pretty well, gets a little fussy and gassy when her stomach gets full, which can raise her heart rate and respiratory rate, but after a bit she calms down and falls right asleep. Hopefully they will be able to get her to take the bottle tomorrow. Most likely, she'll be able to to take a little bit but will grow tired quickly and will still need the feeding tube to finish each feeding. Our goal is to have her gradually take more and more of the bottle and move off of the feeding tube. That is her last step towards coming home.

We are planning to finally take the infant CPR class this week, along with the baptism class. We have to get the CPR class in before she comes home, and they wanted us to wait until it was close to her homecoming. Assuming everything continues to go to plan, we'll likely be spending a few nights in the "family care" unit at the hospital next weekend or the following week. We will have to stay there with Riley in the room so they can make sure we can administer her phenobarbital, make the necessary changes to her O2 levels (since she'll be coming home on it), and know how how to use the apnea monitor. After that, she'll be headed home! case scenario we are looking at about a week or so. But it all depends on how she takes the bottles this week.

Pam had a bunch of her family in town this weekend. Riley got to meet Uncle John and Aunt Emily for the first time, will have to wait til she gets out of NICU to meet cousin Benjamin. Great-Grandma and Grandpa Bearth were in town as well, not only to see Riley but also to see John before he ships out to Korea for a year in a few weeks. She handled all the visitors really well, and I know we all enjoyed seeing every one.

Riley has been awake and "fussy" more than ever now. The nurses are always telling us how much time she has been spending in their arms, or in her bouncy seat, and today she surprised us by being in her swing when we showed up. It was hilarious to see her swinging (very fast) side to side with all her wires attached. She was moving so fast, yet sound asleep! Here's a photo...

Thursday, September 10, 2009

100 days old...and a lot of 9's

Today Riley is now 100 days old. Yesterday, 9-9-09, she was 99 days old. She hit 9 pounds, and measured 19.5" long (not sure how she lost an inch?). That's a lot of 9's! I guess that will be her lucky number. Tonight she was 9lb 3oz...still gaining a little weight each day. She is still on the high-flow nasal cannulas, but they are slowly moving the settings down each day, and probably Saturday or Sunday she'll move down to the low-flow. Then after a few days on that, they'll try to do a bottle feeding again, or possibly do it right away if they feel she is ready. She hasn't had any episodes in the last couple days, and if that continues after she moves to the low-flow there is a good chance she'll move upstairs to the Special Care Nursery. Don't know if we look forward to that or not, we've grown so close to our team of NICU nurses and really like all of them. Occupational Therapy has been visiting her once a day doing "exercises", moving her arms and legs, positioning her on her belly, and doing some visual stimulation as well. They said she is making good progress and shouldn't need much follow-up when she leaves. She is still needing a lot of attention, the nurses are always telling us how fussy she is when we aren't there. They put her in the bouncy seat and swing a lot, and also spend a lot of time holding her, even though Pam and I usually both hold her each day. Despite how fussy she gets, she always calms right down when in some one's arms.

Congrats to our good friends Tom and Shawna. Their daughter, Claire, was born yesterday. Claire and Riley were due only a few weeks apart, so its great she has joined us now. Riley and Claire are going to be the best of friends! For those of you counting, that will be 10 babies within 18 months in our neighborhood, including the few that are "on the way". Like we've said many times before - there is something in the water in Falcon Falls.

Here's a pic from tonight of Riley wrapped in her "burrito" in the bouncy seat.

Monday, September 7, 2009

Labor Day weekend

This weekend brought Riley a few positive steps in the right direction. On Sunday, they went for attempt #6 off the C-PAP and as of tonight, she was still doing really well. This time, we went to high-flow nasal cannulas, which will still provide a small amount of pressure. They decided to try it this way in an effort to make "baby steps" towards the breathing independence we are looking for. So far, it seems to be working. She has only had a few small episodes, but most of them are surrounding her getting gassy or pulling the tubes out of her nose. She did have a few very full diapers these past few days, so a little fussiness here and there is expected. The nurses have been doing their best to keep her stimulated - putting her in the bouncy seat, turning the mobile on, taking her out and holding her, and even lately she has been in a swing they have there in the NICU. She seems to enjoy all of it, but still loves it when Pam and I get to hold her. Every day this weekend she has just slept perfectly still in our arms, which is always a great feeling. They are going to wait a few days before making any changes to feedings or trying a bottle - again, baby steps. We don't want to throw too much at her at once - that seemed to be what was working against her the last few times.

Weight gain has slowed down a bit, probably due to being off the calorie-laden formula. Was at 8lb 10.5oz last night - been hovering around that the past few days. I think at this rate, we are still expecting to bring her home around 9lbs - such a huge change from the little 2lb bundle of joy that entered our lives over 3 months ago! We went through her closet today, and it looks like she has already grown out of not only half her clothes, but some of the diapers we have here as well!

Got a few good pics of her the last couple days...

Compare this picture to the early ones, where our hand covered her entire torso. Can't believe how big she has gotten! Not sure exactly, but I think she is around 20.5" (born at 14.5").

Great closeup of her face. We pulled out my baby album last week to compare, and she actually resembles me quite a bit! Has a few of Pam's features as well, but there's not doubt she is taking after her Daddy.

This one was from this afternoon, right after another bath. Her diaper had overflowed and got all over the place, so she had to be cleaned up. She did really well with it too, didn't even de-sat a bit!

Thursday, September 3, 2009

Another step forward, another step back

Riley did great the last couple days off the C-PAP, but this morning she had enough episodes that they decided to move her back on. She wasn't handling the shortened feedings very well yesterday, so they moved them back to 2 hours but it wasn't enough to settle her down. Yesterday the speech therapist, who also is responsible for getting her to bottle feed, visited. She was able to give her a bottle, about 5cc worth, but determined pretty quickly that she didn't have the "nipple readiness" she needed to bottle feed and said they would wait another week to try again. Then early in the morning she had a handful of A/B episodes back-to-back, a few that required bagging, so they moved her back to the C-PAP and she has done real well since then. Oh well, we'll just try again this weekend. We're trying not to let it get us frustrated, we know in time she'll get there, just taking a little longer than we hoped.

She has an IV in again, but hopefully not for long. Because the episodes came out of nowhere last night, they drew a blood culture to see if she has an infection and started her on some antibiotics just in case, but so far the cultures have come back negative so those will likely be stopped by morning.

She's still gaining weight, up to 8lb 8oz last night! They changed her intake a little a few days ago, moving her off the "SC-30" down to "SC-24", which means she is still getting 50% formula and 50% breast milk, but the formula is a more normal formula, and not heavy in calories like before. They thought this would slow down her weight gain a little, but doesn't seem to have changed it much since she gained another 100g (3+ oz) yesterday.

No new battery was dead the last few days. Will get some good photos this weekend hopefully.

Tuesday, September 1, 2009

5th time's a charm!

I always thought the old adage said "third time's a charm"...I guess for us it's really the 5th time. Yesterday at 1pm they decided to go for try #5 at taking Riley off the C-PAP. When we went in last night after work she was doing really well, much better than the last few times we saw her after moving to the nasal cannulas. Pam called in this morning to see how the night went, and was pleasantly surprised to find out she was still doing really well. This morning they moved her feedings down to 30min from 2hrs, and she has been handling the full stomach very well. The next step will be to get her to take to a bottle. We were hoping to get to try that tonight, but she is still breathing a little too hard to be able to try it. They said it will take just the right conditions to get her going on the bottle, she has to be breathing a little slower, be awake enough to concentrate on sucking, and she has to give "signals" that she's ready (sucking motions, sticking tongue out, etc.) And even then, she'll probably not do full feeds on the bottle, since it takes a lot of energy at first, so her feedings will still be primarily through the feeding tube. She's still gaining weight, up to 8lb 2oz last night.

Since she is spending more and more of her time awake, they have told us to bring in more toys to keep her occupied. So tonight we brought in the mobile we had bought for her crib. She has also been spending a few hours a day in her bouncy seat, which she really seems to enjoy. The mobile should help stimulate some neck movement and get her to look up more, which should also help flatten her head out a little more, since she's still got a bit of an egg-head from laying on the side all the time.

Here's a photo of Pam holding her last night...sound asleep and on the nasal cannulas!

Here's her crib in the NICU with the mobile we brought in.