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!