Christmas

We know it hasn't been too consistent since we've gotten home but just know that no news is good news. Five kids are keeping me in line with Ryan finishing up at St. Marks and doing some days at Hill this past week. We had such a nice Christmas and felt love from so many people this season. Our family has felt concern and care over these months of back and forth. We are so grateful! As you can see, a little baby is growing up! She's tipping the scales at 9 pounds 10 ounces!

Big Day

Hi everyone--I haven't posted in a few days because we have her home now and she has been doing well for the most part. Annie doing well is worthy of note though! The past few days have been pretty rough health-wise for our family, though, and we are hoping that Annie is not too adversely affected. It seems like she came home to a house full of sick people, so it looks like she'll definitely be exposed to what the world has to offer germ-wise. We just pray that she can manage it and not get too sick through it all.

Today was a pretty big day for our family. It all started out with Caleb getting baptized. While he and I were sitting up in the choir seats waiting for his turn, he leaned over to me and said "Dad, I'm never going to be the same again now that I'm getting baptized. I won't be how I was when we left home this morning--I'll be different." I thought that was quite the observation on his part. About his baptism Caleb said he was pretty shocked at how cold the water was (as was I), but then was amazed at the warm feeling he felt when he went under the water. He explained it as a warm feeling in his chest and understood it as the Holy Ghost. It was pretty neat to hear him explain that.

After the baptism and confirmation we came home and performed Annie's baby blessing. She looked so beautiful, as you can see from the pictures. She was quite fussy before the blessing but seemed so calm and relaxed during and afterward.

One final thought for tonight: we just can't say enough how thankful we are to all of you for your love and support of us over the past several weeks. You have been so kind in so many ways and we feel extremely grateful. We are just blown away at all that has been done for us--the prayers, fasting, meals, phone calls, e-mails, letters, gifts, and most recently a fund-raiser. Thank you so much.

Home again

Tonight we brought Annie home...again! She is now on a little bit of O2 (we have the oxygen tank tower and never-ending tubing for easy roaming around the house) and has a pulse oximeter monitoring her sats as well. This gives us a lot more comfort during her sleeping hours. It's also nice to have a live in nurse with us for the next few nights (Nicki's mom!!). Thanks Chris! Annie is doing great so far and the kids are absolutely ecstatic about it. When Ruby saw Annie for the first time she just sort of shook and went "oooooooohhhhhhhh!" That was pretty great to see. Much different than when we brought Annie home the first time and Ruby turned her back on her! So, things are looking pretty good right now and we are so happy to have Annie back here with us. Thanks so, so much for all of your kindness, love, generosity and prayers on our behalf. We have definitely felt the support and so has Annie!

Out of the ICU

Today Annie did such a great job with her breathing! As the day progressed Annie was able to be slowly weaned off of the O2 flow amount until ultimately she had all O2 removed and she is now moved from the ICU to a regular room on the floor. This is exciting because it suggests she's doing a lot better. It turns out Annie has a strain of the flu and that could very well bear some of the responsibility for her sickness. She's still pretty wheezy and raspy, but that does not stop her from wanting to bottle feed. She still hasn't been too keen--as of yet--to breast feed. We'll see as she gets even stronger and recovers from her sickness. Tonight Nicki is spending the night with Annie to try and feed her when she wakes up for feedings. We are pluggin' right along and excited for the progress Annie's making!

Extubated Annie

After extubation

Pre extubation

This afternoon Annie was extubated from the ventilator and her O2 saturation really has been good ever since. However, she does have a very soar throat and there is quite a bit of inflammation in the breathing passageway. This is making her work very hard to breath so her lungs are retracting quite a bit. This causes her heart rate to increase and tires her out. She has also been secreting quite a bit of gunk during and after her intubation which has been difficult for Annie to cough up and swallow. All of this makes her anxious and irritable--it's hard to see her this way. Right now she cries but has a horse little voice so she can't make much noise. This is a time when we would actually welcome a nice healthy cry from a baby!!

So, tonight the staff gave Annie some morphine, a breathing treatment (to open the airway) and some adivan to help her be more comfortable and sleep tonight. Since intubation Annie has been on 1/2 Liter of regular O2, but may be moved to some high flow tonight just to spell her breathing mechanism (which is getting exhausted from the constricted airway). We hope she will be able to rest and recuperate tonight!

I have to say--I as away this whole weekend helping out with a marriage and family retreat for the USAF up at Wolf Creek--Annie looks so much better than when I left! She was so swollen and sad when I left. She's still a bit sad, but the swelling is down quite a bit. Her weight gain is good and normal for her growth pattern. Today she weighs 8-1/2 lb! That means she has basically quadrupled in weight since August 17th. Go Annie!

Thank you all for your fasting, prayers and thoughts these past few days. We have felt the support and are grateful.

Weaning

Annie is slowly being weaned off the vent, but it is slow going. Today the staff let Nicki hold Annie very briefly, but it was interrupted when a piece broke on the ventilator, Annie started vomiting and turning blue, and ultimately they had to bag her. We are all pretty baffled about the cause of all of this. All the tests have come back negative--even for rhino virus. So, it seems there is no real causes, yet Annie is very congested and having breathing problems! Very perplexing. Tomorrow the hope is continue the weaning from the vent. During today's weaning process Annie was actually doing more breathing on her own than she's done in the recent past, so that is good! We will hope and pray for continued improvement tomorrow and as the days go by.

Annie day 5

Hi all: We are feeling pretty positive right now about how things are going--that's the bottom line up front. Today was a big day of tests and results. Earlier this morning Annie had an MRI to check for brain function and possible centrally caused apnea (neurological apnea). In preparation for the MRI Annie had to have some morphine and adevan (for anxiety) and specifically prepared breathing support (vent) for the 30 minute test. The results from the test show absolutely no problems--this is very happy news! Notice the beautiful picture here of Annie's brain--you can see all the parts and that they are healthy. We also got the results back from the PH study....drum roll...the findings: reflux is not really a factor here. The test results show that just a small handful of her breathing episodes coincided with acidic reflux. Most of the time, however, the episodes just happened--independent fromt acid reflux. The test did show that zantec (reflux medication) did eliminate the acid reflux, so Annie will remain on that med for a short period of time.

The attending doc spoke with us several times today, and one other test she proposed was a spinal tap to check for possible meningitis. They were slightly concerned about this being a possibility because of how quickly her fever and lung congestion spiked over the night. This was of course scary to hear that this might be a diagnosis! So, they did the spinal tap--which was sort of traumatic in and of itself watching a big needle being inserted into her lower back! It was also fascinating to watch the resident who did it, who was also training a medical student how to do it. I was glad the resident did it instead of the student. After they did it I asked them how it was for them to do such a procedure...do they ever feel nervous? Yes! The resident said she did feel nervous at first but now that she's done so many she doesn't anymore. Although, it did seem like I saw her hand shaking as she was capturing the spinal fluid droplets into her vial. We are all humans here right? I think I'd be nervous too. So, the spinal fluid came back clear and no signs indicating high white blood cell counts (hinting at meningitis). In fact, Annie only had 2 white blood cells in her fluid. Good news.

Annie also had another chest Xray today which revealed that the fluid in her lungs is still there, but it has now moved around and is diffusing a bit and breaking up. The team suggests it will get even clearer once she's off the vent.

So, for now Annie is resting and riding happily on the ventilator. We are hoping to wean her off the vent very soon and then introduce feedings again. The feedings at that point will be dairy free to see if that might help with things. As far as the weaning is concerned, Annie seems SO tired and is enjoying the break from breathing on her own right now. The hope is that as her cold virus passes and she gets rest she'll have more energy to begin breathing on her own again.

So here's what we'ver learned: reflux is not the primary cause, there is not a clear neurological problem, she has an infection and had a fever--but now has her temp under control, the cause may be age related (still a premie baby), it could be allergy related, and she's going to be here for a bit more. More to follow!

Primary children's day 4

HI all--

Annie had a very rough day, which ultimately led to her being placed on the ventilator again. She was just having way too many desaturations and heart rate fluctuations. It is hard to see her go back on the breathing tube. Also, the PH test was completed, but the results are still not in. They are thinking there could be several possible causes: perhaps the rhina virus (common cold) is affecting her more than we had thought, there could be something neurological (so, they are doing an MRI tomorrow morning to look at that), could be reflux related, could just be prematurity etc.

Tonight as Nicki and I were leaving the Resp therapist discovered Annie's lungs were a bit gunky. This has been the first time her lungs looked like that, so we are waiting to see what's happening with that. According to the nurse that could be from the virus. To counter that the RT has to adjust the vent to match her constricted needs. Tomorrow morning she will be getting a chest XRay to check all that out. One good thing about the intubation is that finally Annie gets to sleep and get rest that she hasn't had for several days now. All of the breathing episodes had made it so she couldn't sleep because the nurses and RTs had to continually revive her.

Annie has not lost much weight, and that is good. She weighs 7 lb 9 oz. She is still getting feeds through the NJ tube, but the concoction is now not breast milk but a special formula called Alocare. It is a dairy free product--and the test here is to see if allergies could be playing into this in any way.

We are taking one day at a time. It looks like we may be here for a while again...who knows how long. It's hard not to know when we'll head home with Annie. It's hard to see her so sick. Her eyes are swollen and she just looks so exhausted!

Finally, again I want to thank the many people who are helping us out right now in so many ways. Thanks for the prayers, the calls, the e-mails, the food, the help with kids and the friendship. It all means so much to us.

More on Annie

Today Annie started the PH study to see about reflux and acidity levels in Annie. The study will conclude tomorrow and hopefully will give us some clues into what is happening. The last few hours have been very tough breathing hours--she's been having lots of desats and several bradycardia. They gave her some atripene to help her heart regulate, particularly while they put down a new feeding tube. This feeding tube is an NJ tube which bypasses the stomach and goes directly into the large intestine. This, in conjunction with reflux medication helps control for reflux testing. They will see if eliminating acid in the stomach will stop the breathing episodes. There is also the possibility that all of this is neurological as well. But, why would she have done so well for several days at home and prior to leaving the NICU then all of the sudden be struggling so much? There are just a lot of unanswered questions!

So, currently Annie is on about 4 liters at 30% and seems to be doing fine with that. Perhaps Annie is just wiped out and needs the extra breathing support for a bit. We will see.

Nicki and I are continuing down the tricky path of balancing our parenting between a kid in the ICU and four others at home. Not an easy thing to do!! Thanks for your support.

Another day in the PICU

More news on Annie: Today Annie had a bronchoscopy to check for possible causes to the apneic spells. To do this procedure (pretty invasive and considered to be a surgery) they had to sedate her. Nicki and I were both a bit worried about this because of her already weak body and breathing ability. However, the need for the procedure outweighed the worries and we went ahead. The result was that nothing looked too serious. She does have some spots on her trachea--possibly caused by reflux, and she does have a bronchial sinus which is an extra passage off the trachea. No big deal there. Well, recovery from this procedure has been difficult for Annie and she has been on the ventilator most of the day following the procedure.

For those of you who have seen your child on a ventilator you know what that feels like. I CAN'T STAND it! It's so sad to see your little baby crying--tears flowing--but making no sound because the tube is blocking her vocal chords. It looks like it feels horrible.

So, tonight they tried a few times to ween her off the vent but she kept having more apneic spells and it wasn't looking too hopeful for a quick transition back onto the high flow. The hope following extubation is for Annie to have a PH test done to measure the PH level of her reflux. This test is done by inserting a tube into her nose and then monitoring over a 24 hour span her various levels. This test can't be done until she's off the vent though.

Good news however....the nurse just called 15 minutes ago and said she was charting and all of the sudden heard Annie coughing and then crying! You can't cry out loud with the tube in, and the nurse soon discovered Annie had coughed or pulled the vent out. So, they just left it out and turned on the high flow O2--and she seems to be doing fine right now. Hopefully she'll continue to do well through the night and tomorrow they'll be able to run the tests.

One last thing. We have received so many phone calls, e-mails, texts, facebook messages etc from so many of you--thank you so much for your love and support. It means a lot to us knowing you are praying and thinking of us and Annie.

A few steps back...

I need to let everyone know about what has happened with Annie the past couple days. Today marks her two week home mark, but tonight she is not home. Last night after an evening feeding Nicki was burping Annie and suddenly noticed she was not breathing and had turned bluish-purple. This was extremely scary and she raced out of the room, down the hall and into the family room where I was playing my trombone--getting ready to perform in church today. They ran into the room and Nicki got my attention pretty quickly. I raced over to her and there was little Annie hanging limp in Nicki's arms--her body looked lifeless and was very blue. Her little hands hung there motionless and for all intents and purposes she looked dead! Oh my goodness. Nicki and I were both in shock. I took the limp body of our Annie and began trying to rouse her. At this point I had her on the guest bed we have in the family room. We called her name, patted her back, scratched her feet--all to no avail. Immediately the thoughts began to swim around in my head: this was the end; this was how Annie's life would end; she was going to die and I felt helpless. I found myself going through the motions of beginning infant CPR. I got her on her back and tilted her had backward to try and clear the airway the best I could. Supporting her neck with one hand, I used the other hand to begin chest compressions. I used two fingers and began compressing her chest in the hopes of jump starting her breathing system.

After a few compressions I paused (she was still just as blue and limp) and began doing mouth to mouth--I did this a couple times. As I breathed oxygen in I could hear liquid gargling inside her lungs and knew she had most likely aspirated breast milk. After blowing in the air I noticed milk started oozing out her nose and mouth. I sort of took courage at this, thinking that maybe we were making some progress and the junk was starting to make its exit. But, Annie was still just as limp and lifeless as before. I did this whole CPR process another time with the same result. While I was doing this Nicki was on the telephone with the EMTs.

By now it had been probably 3-4 minutes since we started trying to resuscitate Annie (Nicki and I moved her to the floor at this point to try with harder ground) and I was losing hope. I didn't know what more I could do. At that moment--the moment when I felt all hope was gone--I had the thought: Ryan, give her a blessing. At first I thought, well, I don't want to stop CPR--I've got to keep going. But, the thought won out. I supported Annie with one hand and put my free hand on her head. I basically said the words: "Annie, by the power of the priesthood I bless you to breath"--in that very moment Annie took a giant gasp of air! This gave me a lot of hope and I began trying to suck fluid out of her mouth and nose with my mouth. I also continued trying to breath oxygen into her mouth--to get her breathing fully again. She gasped again and I could feel her little heart racing under my hands. Nicki brought a suction bulb and we began trying to suction the fluid out that way as well.

Just then the paramedics arrived--and Caleb and Elsie let them in. I had no idea Caleb and Elsie were awake! My whole world had stood still for those minutes of CPR and working with Annie. The emergency personnel ran in and asked to see Annie--who at this point was panting and gaining color back. They did some tests and basically monitored her for 20-30 minutes and then ultimately determined we ought to take her to Primary Children's to be looked at. So, we called my mom who immediately left Provo to come stay with the kids at home, called Jake our home teacher--who graciously came and sat with our kids until mom showed up.

So, we took Annie to the ER at Primary and after several hours she was admitted for observation and a battery of tests. All the tests so far have shown nothing conclusive as to the cause. She does not have infection (yet), her heart is fine, her vitals are fine. Her one big problem: she just keeps desaturating! Tomorrow Annie will get a bronchoscopy, a head ultrasound, an upper GI test, and possibly a swallow study. All of these tests will hopefully give us some more answers.

For now, we are exhausted and the kids are ready for their mom and dad to just stay put. This was so, so scary. No parent should ever have to go through something like this. Of course, now there is no way we will ever want to leave her unattended when she comes home! How will we sleep or do anything where we take our eyes off of her? Hopefully we will come home with a monitor of some sort.

Finally, thanks be to God for His power in lending Annie breath. He is the one who jump started her breathing. He is with us through this experience--this painful, aggravating, depressing, frightening, gut wrenching experience. More to follow.

We're Home!!!!

We are now officially home with Annie. We brought her home at around 1:30pm yesterday and she is doing great here. We were somewhat worried about how Ruby especially would react and at first our worries were confirmed! Ruby didn't really want much to do with her at all. However, as the day today progressed, Ruby warmed up to her baby sister. The shot here that includes Ruby is sort of indicative of her early relations with Annie (back turned).

So, she has been doing great since coming home! Today she had the pediatrician visit and he just reconfirmed to us how miraculous Annie's journey has been so far. He said something to the effect of "do you realize what a miracle she is??" He pointed out how amazing it is that she didn't have any brain bleeds, no infections, no eye problems and no slew of other things that could have gone wrong. We do feel so grateful and are so happy to have her home with us. So, now we begin the real adventure--life at home with five kiddos.

Thank you all so much for your love and support of us through this journey. We have felt your steady presence through the many ups and downs and count ourselves very blessed indeed to have friends and family like you. May you all be blessed in your various journeys as well!

Just days away...

Annie is doing SO well! She is eating like a champ (all day today) and breathing great too. There have been no A's and B's since Sunday and the plan right now is to take her home either this Sunday or Monday. So, as you can imagine we are very excited for this. Her weight is still hovering around 6 lb 11 oz which is very good as well. We are very happy about all of this.

Annie's news

Tonight Nicki and I both spent some great time with Annie. We gave her a bath and I fed her a bottle. She was pretty wiped out from the bath so she had a hard time staying awake to nurse later on, so that was kind of tough. She is doing SO well right now. The doctors think she ought to be able to come home by Sunday or Monday...we'll see! It all depends on if she can keep breathing well and not have any A's and B's. The last one she had was Sunday night. She is really starting to fill out as well. She weighs 6 lb nearly 11 oz tonight! We are so grateful she's doing so well and we all can't wait until she gets home (although there are some worries about how we will manage two babies! Thanks for all your prayers and support.

More news

Things are great--she did have an A and B a couple nights ago again so the count is again approaching day two again. So, at least five or six more days...or more! She is doing as well as ever though. No oxygen and no feeding tube! She's eating like a champ--today I (Ryan) got to feed her a bottle (59 CCs) which she downed in about 15 minutes, after which she took a nice long snooze. According to the nurse her sleep time is during the day and her wakeful time is during the night. That will definitely have to be nipped in the bud. Nicki and I are already not sleeping much with all of the travel to the hospital and things. So, things are great right now and we are so thankful!

Breathin' Free

Tonight Annie weighs 6 lb 7 oz and is completely off of her oxygen and handling it very well. It has now been almost two days since her last A's and B's, which means in 5-6 days she should be able to come home if everything else looks good. Tomorrow morning they'll be doing the labs to check her hematocrit levels--we'll let you know what they say tomorrow. Her color seems to tell us that her crit has improved. We will see. Annie is doing very well with eating--tonight she drank an entire bottle of breast milk in 20 minutes! That is also a sign she'll be ready to go home soon. Things are looking good!

Good News

Hey all--great news tonight from the U of U hospital (AKA home away from home). Annie has just a couple of tests left to clear and barring no major A's and B's (major desats) she will probably be coming home (real home) within the next 7-10 days or so!!! This is good news, and exciting news. It is also scary news! Soon we will really have two babies at home--are we ready for that? So, the scoop: Annie will have her hematarit level checked this Thursday and if it is over 26 (it's hovered there for some time) then they will take no action. She's currently taking one weekly dose of a hematacrit booster. If it hasn't gone up at all then they'll have to do a transfusion next week before sending her home. We are of course hoping for a natural elevation in the crit level. She also has a chest x-ray in the morning to check the PDA valve in her heart. If her heart is still the same and there is no fluid in her lungs they will let her go home and keep working on closing that valve on her own. We will see what happens on Thursday with the crit. Annie is weighing in nearly at 6.5 lb and is eating so well now. She had four full bottles in a row today then ate with Nicki in the evening. HOORAY!!! It is very good to see her growing and doing so well. Her breathing is leaps and bounds better then it's been and she is basically off the oxygen. There's just a small amount of flow going in for good measure. This has been quite an experience for us. Nicki has gotten to know all of the other parents of babies in the NICU quite well--I've met some of them but not to the extent she has. I think that sense of community--being with others who understand what it's like to go through this--is hugely valuable when experiencing something like this. Thanks again for all of your support through this journey of ours. We are touched by the messages we get, the prayers and all the well wishes. Thank you!

Heavyweight

Annie weighs six pounds!!!!!!!!!! We just got finished giving her another bath and she is doing great. She looks so good and is such a great baby. Currently she alternates between no oxygen requirement and .02 flow, so her breathing is coming along very well. She has generally been nursing well, although the past few days haven't been quite as good as before that. Tonight we brought the baby car seat to leave here so it will inspire Annie to want to go home and also so we will be ready when that day unexpectedly comes. So, things are moving right along very well. Thanks for all the support!

Update today

Hi all, Annie weighs 5 lb 11.5 oz! She is on .5 L O2 at room air and doing well on that. She did have one A and B today but is doing better generally. We are feeling we are getting closer to taking her home. Maybe by Thanksgiving. Hard to believe that our little Annie girl started at under 3 lb and is now almost 6 lbs! 6 lbs never seemed so heavy!

Princess Annie

Annie was on room air for most of today--that means she had no canula and extra O2. She did great on it until later this evening and they had to put her back on a little bit because she was getting tired. She is doing really great though! Today the kids each got to hold her--minus Ruby. The best thing was they do halloween pictures with all the babies and we got Annie's today. She's a princess!They are SO cute--I've attached a couple for you. Annie weighs about 5 lb 7 or 8 oz. Hope you're all well.

2 months and change!

We have really felt so many prayers and positive thoughts coming our way! Thanks so much for helping us through this time. Today was a totally different day from our Monday! Annie has settled back down and really turned a corner in her breathing AND eating.

Today there were only a few desaturations, even with her eye exam. They actually moved her all the way down from 2 liters of high flow oxygen to 1/2 a liter on regular nasal canula. The eye exam looked good and the doctor seemed to think she's out of the woods for having retinopothy even with one eye not quite vascularized. That's good news!

She also decided today was the day to venture out and try oral feedings. Two huge steps in progress to coming home. Her growth has slowed down a bit so they are pumping up the protein to help her put on some extra weight. She's at 5 lbs 5 ou tonight. It's pretty amazing to see how well she has done and we are so grateful!

It was also Elsie's sixth birthday today. She went over to our neighbor's house to play and asked to wear some of the mom's shoes--she loves wearing high heels. The mom was a little worried about Elsie getting hurt wearing such big shoes and tried to disuade her. So Els pulled out the "It's My Birthday" card. Our neighbor knew she couldn't say no to that. After coming home Elsie informed me that "she has nicer shoes than you, Mom". She's six going on sixteen;) Lots of love to all of you and again, thanks so much for all your support during this time. We feel a little disconnected because of our crazy schedules right now but please know we love you and think of you often.

Tough Day

Today was a rough day for Annie. She had an EKG, chest x-ray, bnp blood test, and to top it all off got her two month vaccinations. . . This was all too much for a baby girl. These caused her to go right over the edge. By five o'clock this afternoon she had 4 grade twos, one grade three, and one grade four A and B. This is when her heart rate slows way down and her oxygen saturation drops drastically. For the four, I was standing right by her with the nurse and the respiratory therapist. It was enough to make a momma start to cry. It's no fun to watch her go blue and not breath for about three minutes while they first try to stimulate her then eventually bag her and breathe for her. But other than not breathing she's doing well;). All the tests came back looking good. They ruled out Chronic Lung Disease and Respiratory Distress Syndrome which is great. In the next few days they may do a Bronchoscopy to see if something is wrong in her anatomy that is causing these spells. But for now they will just let her rest. They switched her back to the high flow nasal canula on 2 liters of oxygen. That air pressure helps remind her to just keep breathing. Now we just have the eye exam to overcome on Wednesday and hope its not another set back.

In other news, Ruby is walking around holding her hand to her ear and saying hello. She must see us talking on the phone often. Elsie is getting pumped up for her sixth birthday in just two days. Caleb lost his top front tooth and is having a hard time saying his "S" sound and can't give up that tooth to the tooth fairy for anything. Sophie has been writing poetry and news articles lately, some for school and some just for fun. She has really taken off in her writing. Ryan is busily looking for Hospital Chaplain positions since the Air Force told him they just don't have a place for him right now--Quite a blow but we know something else will work out. And I'm just trying to keep my emotions in check with it all.

A GREAT day!!

Today Annie had an outstanding day of breathing and hangin' out in the NICU. She had no A's and B's and did not need any extra additional O2 support! Tonight she is weighing 5 lb 3 oz and is looking so great...as you can see from these pics. We are hoping and praying that maybe today is a sign of things to come, that maybe things are triggering neurologically and she's going to be keen on breathing better now. Nicki has been trying to spend more time up with Annie to nurse and that has been an adventure. It presents more difficulties than we had previously imagined! We are starting to see why it is the breathing and the feeding that determines when kids can go home from the NICU. We're hoping that Annie will just continue to grow in her desire to eat! Enjoy the pics!

A GREAT day!!

Another update

Hi all, haven't done one of these in a few days...we've had a little bit going on lately :) Anyway, here's the latest: Annie weighs 5 lb 1 oz and is growing very magnificently! The breathing is the biggest issue still right now and it is mostly ascribed to her premature neurological development. Supposedly at some point something will just click in the brain and she'll start breathing. There could be a link to Annie's low hematocrit level. It hasn't increased since it was checked a few weeks ago. We are going to talk to the docs tomorrow about increasing iron and also checking the reticula sites--this shows if more red blood cells are being produced, the higher number the better. More to follow on that. Today Elsie got to hold Annie for the first time and that was pretty great. Annie even opened her eyes for the special occasion. Caleb drew a picture for Annie last night and was very proud and excited to have it taped up on Annie's wall tonight. It reads: "Dear Annie, I can't wait until you come home. I love you. Your friend, Caleb. We are pushing forward with this and continue to pray that breathing and feeding will go better. Thanks for all the support!

What a Day

So, this is Nicki. . . Today I took my mom and dad up to see how much she has grown and how well she is doing. She wanted to set the record straight that she's still little and needs lots of love and attention. Right when my mom and I walked in the door she had a grade 4 A and B. This means that she stopped breathing, her heart rate dropped to almost 30 and stayed down off and on for almost 5 minutes. She got pretty "dusky" meaning blue and she went completely limp! It just goes with the territory. She had another one later in the morning while I was holding her. So the new move now is they took her feeding tube down further into her small intestine to see if that would reduce the reflux and help with the A and Bs. We should know by tomorrow if it really is reflux or see if more tests need to be done. She also had an echo which showed that her PDA, valve in heart is still there but is small. They don't feel like it has any affect on her breathing and that it's hopefully closing on it's own. She's growing so fast and was at 4 pounds 10.5 ounces last night. She's resting and growing which is what we love to see. Just as long as she keeps breathing!:)

Update

Annie is now in the open crib and is adjusting very well to the temperature change. She is swaddled quite well and has several layers of clothing on to keep her warm. She is still having some struggles breathing and had a grade 2 and 3 A and B tonight--one was just before her feeding and the other was right after the shift change tonight around 7 or so. So, we continue to deal with that mystery. Annie is gaining great weight! She now weighs a whopping 4 lb 7.5 oz! So, that's the news for now.

Good progress

Annie weighs 4lb 5.5 oz and is doing very well today. She only had one grade one A and B today and is resting/eating very well tonight. With her growing and getting older (gaining strength) she seems to just be doing better in general. Annie is on day two of the reflux medication and they will take it the full seven days this time to ensure its proper functioning. Today Nicki got to hold Annie for three hours and she did great! With her weight gain, Annie is actually developing some rolls in her skin. We will definitely attach some photos of those rolls in the near future. As for now, things are quiet and good!

Update

Annie weighs 4 lb 3 oz tonight. Today Annie had a really tough day, which is very scary and emotional for us! She had two grade 4 episodes today--that's where she just completely stops breathing and needs to be bagged with O2. After talking to the doctor we decided to have an ENT specialist come and examine her to check for possible problems there. They didn't find anything, but will be in tomorrow early to do a test on her throat and vocal chords using a scope camera to look for possible problems there. If there are no problems here this will rule out ENT issues that may or may not be contributing to her breathing problems. So, we'll see what happens with that. If she has more serious episodes they will do some more testing for possible infection development--they say there could be some sort of infection developing which could possibly be contributing to the issues. So, again we wait. It seems we are waiting for everything in our life right now and it's not easy. It hurts not having answers and not being able to be in control of outcomes! Earlier this afternoon when Nicki was at the bedside Annie's temperature was down, but it came back up after a bit. So, she's learning how to regulate temp as well right now. It's an ongoing process and we trust that God is traveling with us through this journey. Peace out--

Update plus some token pics of our other kids

The Flag Football--Piano Player!

At the Hill AFB water park
Enjoying a snack in our backyard
Big brother taking care of litte sister

The three girls hangin' out on the roof of the van....

One of our esteemed blog followers mentioned she has forgotten what our other kids look like so I've posted a few of their pictures here. Hope this helps jog your memory of what they look like :).

Here's the update:

Tonight I am proud to announce some good news--Annie has broken the 4 lb limit and weighs in at 4 lb 1 oz. It's pretty neat to think that she has almost doubled in size. Tonight I got to snuggle with her for a bit while she began her feeding. Unfortunately that didn't last long because she forgot to breath again. It was a bummer to have to put her back down, but I was happy to help get her situated to breath better while eating. I'm starting to think that maybe if the food didn't taste so good she might not forget to breath; focus less on the good food and more on the O2! Maybe Nicki could start eating more lima beans.... Anyway, the other big news today was that they decided to put her back in the isolette and can the crib idea for a few more days. She has a one-sie on though in preparation for further crib experiences, but for now she is back in the comfort, peace and protection of the isolette. This is good. Both Nicki and I felt like she was having to do too much by being in the crib and trying to regulate temp while trying to breath and eat etc. So, time will do its business and Annie will hopefully grow out of these breathing problems. We pray it may be so.

Another Update

Here's a great shot of Annie tonight just before getting her diaper changed.

Same time, different angle--eyes WIDE open!!!

This is what happens after somebody gets a mind of her own and gains a few more pounds! We love our other baby girl Ruby too!

Well, Annie graduated today to a crib. Nicki and I were actually extremely surprised that this happened so soon, and we actually still have our reservations about it. Last night I was told she was making baby (no pun intended) steps toward getting in the crib, and we find out today all of the sudden she's in the crib! It seems like it was all pretty overwhelming for her too, because tonight while I was there I attempted to hold her and she stopped breathing several times. That was very scary for me. It seems like she struggles the most when she has to try and do multiple things all at the same time--and with a low hematacrit: she has to digest food, breath, now maintain temperature, take in new sound stimuli (now that she's out of the isolette) etc. That's a lot to do for a kid who has already been struggling to breath, has a PDA and a low crit. Anyway, if things go poorly tonight I think we will ask the docs about slowing things down a bit. She is gaining good weight--tonight she weighed 1600 grams or 3 lb 15 oz--just shy of 4 lb. I got some great pics of her tonight and will put those on the blog, so check that out. We continue to pray that Annie will grow out of these desaturations and A's and B's! She sure is a beautiful girl--as you can tell from the pics--and has an out of this world spirit. We love her if you can't tell.

Sweet Little Peanut

Showing off her best side!:)
Her cherub pose!
Here's our sweet little baby smacking her lips on September 25th. She's almost 34 weeks gestation, or 6 weeks old. She's growing and growing but still having a hard time remembering to breathe. . . There are just so many things for a little one to remember. Her hematocrit is still at 23 so they will be testing it again on Wednesday. We are praying for her little marrow to start producing red blood cells on its own so she won't have to get a blood transfusion. She's still on the high flow oxygen which seems to give her a little more stimulation but only at anywhere from 21 to 24 % which is near room oxygen levels. The doctors stopped the reflux medicine last night because they couldn't see that it was making any difference for her and has some negative side effects. We are seeing "Practicing Medicine" at it's finest:). I've been able to hold her for several hours every day and even to start feeding her. All I can say is thank heaven for the tube in her tummy or she wouldn't be getting anything. We'll work on that one for the next several weeks.

update

Hi everyone! Annie is doing very well as of tonight. She is weighing in now at 3 lb 14 oz. Overall she has had less A's and B's and desaturations than in recent times. That is a great thing! The docs keep moving the O2 levels back and forth to test Annie with what she will do and how she will respond. So, right now she is on 2 Liters of O2 at just around 21-23%. Today Nicki got to hold her skin on skin for a while and she did great during that time. She's still on the reflux meds and that seems to also be positive. Overall we are happy with how Annie is doing. She is growing more hair and continues to sport her hairy back cowlick (Sophie had this too!). Good night

Tuesday

Annie gained another couple oz since yesterday and weighs almost 3 lb 12 oz. The biggest thing that happened today is that the docs all pow-wowed and discussed Annie's persistent desaturations and they determined they would start her on some anti-reflux medication. The hope is that clearing away some of the reflux they will free her airway and thus reduce the desats and A's and B's. The are some side effects from the meds but they are minimal at this point. They also feel that the PDA is actually shutting on its own...just EXTREMELY slowly. Also, they don't think the PDA is the primary cause of her breathing problems. So, they're trying to figure it out by reducing the reflux and seeing what happens. Other than that, Annie is doing great!

Monday's update

Tonight Annie is weighing in at 3 lb 10 oz! She is gaining some good weight and we are very happy about that. Annie's biggest puzzler she's dishing out right now is her breathing. We just can't figure out why she is having so many desaturations and heart rate drops (A's and B's). This is perplexing for us and for the staff. On one hand they say she is doing great, and on the other hand they say she is having more of these breathing episodes than is normal. So, we are left to sort of wait it out to see what will happen. One theory is that the post-feeding reflux is causing the severe desaturations. This would make some sense because most of the desats and A's and B's happen after feedings. There's also the ever-present PDA that has still not closed. The doctors feel pretty certain these events are not only from the PDA though. She does not have an infection, so that is ruled out. They have discontinued her caffein dosage to see if that would make any sort of difference as well and it doesn't seem to have done much. There is also the fact that little Annie is just still little, and with time this ideally will work itself out. There is medication of course for the PDA, and there is medication to stop the reflux. But, there are possible adverse effects to both of those approaches as well. The thought right now is that less is better, and waiting for the body's natural process to unfold is still the best bet. To assist with her breathing issues they have upped her O2 to 2 Liters at 23-25%, which is really not that big of a change from the 1.5 L she was at. So, that's where we're at. She is beautiful, you should all know that! Nicki got to spend some good time holding her today and I got to touch her this evening--that's always nice. More later!

Four Weeks

Today Annie struggled quite a bit with desaturations and heart rate drops--it was actually pretty scary to us! Nicki and I got to go together to see Annie today--as I said yesterday to introduce her to breast feeding, but because she was struggling so much we couldn't do that. We did both get to hold her for a period of time and that was nice. Some of the struggle could have been because she had an eye exam today. This exam was a standard check to see if her eyes are developing properly, and they are at this point. The nurse was explaining that sometimes the stress of the eye exam can lead it increased desaturations etc. So, maybe that's the reason. Annie had another echo test done today to check the PDA size and it still looks about the same it did two weeks ago. So, it's not shutting, but it's also not opening any wider. Still no plans from the docs to try and medicinally close it. Several other tests were conducted to check for viruses or bacteria that may be causing a possible infection, but all tests came back showing normal results. So, for now, Annie does not have any infection. Her lungs look clear as well. Her hematocrit is down a tiny bit more and so blood transfusion is in the discussions with the docs--still no decision there though yet. Today they moved Annie to an official isolette. Apparently the bed she'd been in up until now has been an isolette 2, or giraffe. So, now she's in a "new ride". It's basically the same, just different. Got it? It's just a bit bigger and does not pump out humidity like the other one did. She's growing up and she's four weeks today! That's all for now.

NIght before a Month Old

Tomorrow Annie will be one month old (she's 32 adjusted weeks today)! Here's the latest:

Annie is at 21% with 1 Liter of O2--this is room air basically with high flow O2. She still desaturates some but it's looking good. On her weight she went up 10 grams, which is not substantial enough to change things from the 3 lb 3 oz she was before--it is a gain though and that's good! Today the doctors decided it would be good to introduce Annie tomorrow to the idea of breast feeding, so that adventure will begin tomorrow with the occupational therapist. We will also get to hold her tomorrow while they change out Annie's isolette (they do that every two weeks). Other big news: the tests they ran to check for infection came back negative, so we know now definitively that Annie does not have an infection. That's great to hear! We are all wondering when/if the PDA valve is going to close and it was still loud and clear tonight--so no change there unfortunately. Things are looking great! BTW, this other picture is not Annie, as you can see. This is Ruby doing what she loves most right now--trying on mom's shoes!

New News

The latest and greatest: Annie weighs 3 lb 3oz and has now moved rooms into the area where babies go that are doing a bit better. That's good news! She was struggling a bit--as I said before--on the low flow 1/2 liter O2 so they now have her on high flow 1.5 liter O2 and she seems to be doing very well on that. She has still had some desats and heart rate drops, but is doing better than before. The heart murmur is still there, unfortunately, and they don't yet feel a need to do an echo. We thought they were going to, but they decided against it for various reasons. Her hematocrit is still low and they'll check it again tomorrow. The nurse tonight said everything that's happening to Annie is normal for premies--the O2, the hematocrit, the PDA etc. Annie's platelet count is also up, so there is some mild concern that could indicate an infection, but all her vital signs show normal. We are praying she won't get any sort of infection. This picture that you see here is the position Annie likes to be in during her feedings because it helps her remember to breath well. She's getting pretty strong and even scoots up on her knees a bit when she's on her stomach like this. Is that a sign of things to come? Will she crawl before nearly age one--unlike any of our other kids? We shall see, and I'll keep you posted if she does crawl while in the isolette.

Update

Update on her: Annie is still having some desats so they had to up her O2 back to the 1 Liter. They did another test to see if Annie's heart is working harder than it should and the results were normal. Tomorrow they'll do another echo test to check the progress of the heart valve shutting. They think that the breathing issues are really linked to that. We'll let you know what the results are. Here are some of Annie's stats from tonight: She is going to move to 1 Liter of high flow (more humidity) to see if that will improve things and move away from the desats; her hematocrit was low--27--right on the edge of needing a transfusion, they want to see if she will start making a lot more of the red blood cells; She likes to move around a lot as well; her current weight is 3 lb 3oz and her length is almost 16-3/8, her head is 10-7/8.

10:30pm again

Another day, come and gone and here it is 10:30pm again. Whew. Annie's doing MARVELOUS. Tonight she weighs...drum roll...3 lb! Cool landmark to reach. She is doing great on the reduced O2 of 1/2 liter flow at about 24%--which is very close to room air composition. She continues to gobble up her food and it looks like the food is making its way to the necessary places (hence the weight gain) and working it's way out properly. We are so happy she is doing so well and is healthy. It is really just a waiting game now as we watch her grow. Thanks for all your love and support!

Here's a 3-week birthday photo of Annie.