NICU Day 66

It's so close I can taste it!!! After Annie's vaccinations and repeat eyes exam (which came back clear by the way!) earlier this week, Annie had a terrible spell. I do think that it was related to the stressful events she had experienced. We are now going on 48 hours with no spells and she has taken 75% by bottle. Dr. Devito said that as soon as she can get to 100% by bottle with no weight loss, the feeding tube will be removed. After tube removal, the only thing left will be 5 days with no spells. I am trying to be patient, but we really are close to going home. It might be a week, it might be two or even three, but we are almost home- a LOT closer than we were almost 10 weeks ago. Go Annie go!!!

NICU Day 62

Happy 2 months to our sweet girl! How are we celebrating?? A sleepover for mommy and Annie! Since our brave baby had her 2 month vaccines today, I decided to stay overnight in her room to give her extra cuddles. She did very well during her shots. She only cried for a few seconds. What a fighter she is.

Annie has taken all (yes ALL) of her bottles by mouth today. Woohoo!! She is still having some Brady spells related to feeding and reflux. Hopefully she can work through these little hiccups and we can go home soon. I have to remind myself daily to be patient with her. We will go home, it will just be on her timeline... Not mine. I am so incredibly proud of her and how far she has come.




Happy 2 months!!




She loves her swing.




Bottle time!



Gotta burp.




Bright eyes.

NICU Day 57

Annie is doing well. She did have a Brady spell last night. Also her bottle feeds are slowing down a bit. She took 64% of her feeds by bottle on Monday. Tuesday (yesterday) she was down to 24%. She looses interest or gets too tired by about 10 minutes into her bottle. Therefore, the rest is tube fed. I know she is working as hard as her little body will allow, so I MUST be patient. How hard it is! I found this quote that really made an impression on me. We will make it through this storm, and look back at this time as a distant memory. I have to focus on that as the days seem to get longer as they pass. We will make it out.


"And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about." -Haruki Murakami

NICU Day 56

Annie had another great day! I did not go to the NICU today. I came back to town to run errands and clean the house like a mad woman! Why--you ask? Dr. Markhum (Annie's doctor for the next 2 weeks-replacing Dr. Plosa) said that we needed to finish up any loose ends at home. That means that our Annie girl is coming home VERY soon! She has been spell free for 3 days. She is weighing in at 5 pounds. Plus they are weaning the feeding tube! (This is what is keeping her there at this point) They are letting her "take the wheel" as far as bottle feeding goes. Dr. Markhum gave us the go ahead to feed however much she'll take in a bottle (until she tires out) and tube feed the rest. She has been taking about 30ml out of 45ml per bottle. She's getting there! So as soon as she can wean herself from the feeding tube...home it is!

NICU Day 51-Bumps in the Road

Annie is doing well but we've had a few small bumps in the road. I found out today that she has Stage 1 ROP in her right eye. While this typically resolves without intervention, it's not something a momma wants to hear. We will have a follow up test in 2 weeks to see if anything has changed.

Also, Annie has had several Brady spells over the past few days. Bottle feeding is now at a stand still until these stop- and we all know that bottle feeding is our ticket home. This is agony.

These are classified as small setbacks, but they aren't to me. I want more than anything to get her home. I sit quietly and rock my girl day after day. I know this NICU stay will eventually end (even though it doesn't feel like it). Moms (and Dads) have to be strong. We push on. We ask a million questions. We analyze every little thing that the doctors say. We cry a little (well maybe a lot). We rejoice in the small stuff (who knew I could love diaper changes so much?). We pray. We thank God for this precious little life He has given us.

I've heard that the last leg of the journey is the hardest and longest. That is proving to be true. The days are blending together and there are times that I feel like I might loose my mind. However, we push through and mark yet another day off the calendar- a day closer to going home.












Mommy and Annie snuggle time.





Swollen eyes from her eye exam. It was awful. We both cried.

NICU Day 50

50 days...wow. Hands down the longest 50 days of my life. Anyway, Annie is doing well! She weighed in at 4lb 12oz today. She is talking 10ml bottles 4 times a day-a step in the right direction! I asked "the question" today. I try not to, but goodness I need a countdown! When can we take our baby girl home? Dr. Plosa said we are about 2 weeks from going home!! Of course that is an estimate, but so refreshing to hear. Annie has still been having Brady spells, so those need to stop before we can go anywhere. I'm trying to stay positive. I'm trying to be patient. This is the hardest thing to do. We are close.

NICU Day 47

Today was a great day! Annie moved to her own private room with a tv and a bathroom. We have really hit the big time! This will be the final room we see until it's time to go home. She is doing amazing things. She is up to 4 bottles a day. These are small in amount (just 5ml) but great practice for next week when the doctors plan to increase both quantity and amounts. She is gaining beautifully at 4 pounds 7 ounces. She is averaging about an ounce gained everyday. I'm hoping this continues as she transitions from tube to bottle. Sucking a bottle can burn a lot of calories for such a little girl. She did have two Brady spells today (a drop in heart rate and oxygen). The nurse seemed to think it was from having 2 bottles in 3 hours. It tuckers her out! We have to be "Brady free" for 5 consecutive days to be discharged. While going home is close, Annie still has some work to do. I am so proud of my little fighter. It's amazing how far she has come in 2 short (but oh so long) months.

NICU Day 44

After my blog update yesterday, the doctors decided to let Annie try her first bottle. She did great! Her muscle tone is a little weak (of course) so a little cheek pressure to assist her sucking and there went the milk- right down the hatch. She paced herself well and only dipped her stats once. She will get 5 ml by bottle to start and work her way up from there . This will be a slow and steady process but she is on the right track! Her weight is up to 4 lbs. 3 oz. and her length is 16.3 inches. Grow Annie Grow!

NICU Day 43

Annie is off of oxygen! The doctors actually decided to remove it a few days ago but I was reluctant to celebrate too early. However, she has been doing great without it! Her feeding tube has been moved to her nose in preparation for bottle feeding. She has begun to wean from her isolette as well. She is receiving no extra heat. She is swaddled and dressed and maintaining her temps on her own so far. Next step is bottle feeding. I am hoping this begins within the week. We are moving right along!!

When are we going home?

Annie is doing great! She is well on her way home, it will just take completing 3 big steps. While these steps don't happen overnight- she is getting closer everyday.

Step 1- Breathing/No spells- Annie must wean off of oxygen all together. Today the doctors took her off of vapotherm and put her on regular oxygen without the pressure that the other gave. She is on room air, so really she isn't requiring much of anything in that department. However, Annie must be "spell free" for several consecutive days. These spells include heart rate and breathing spells. A "Brady" spell is when her heart rate and respiratory rate drop significantly. Unfortunately Annie is still having about one of these spells a day (caused from what nurses and doctors think is reflux). While this worries me, the doctors are very reassuring in that a lot of preemies outgrow this by about week 36 or so. I am praying that these resolve soon.

Step 2- Maintaining Temperature- Annie must be able to wean from her heated isolette to an open crib while maintaining her body temperature-all while continuing to gain weight. This process starts at about 1800 grams. Annie is 1740 grams today. They said they would slowly start the weaning process this week. If any of you are wondering what 1740 grams is in pounds/ounces... 3 lbs. 13 oz. and gaining everyday!

Step 3- Bottle feeding- this is the biggest step of all. Annie will have to take all of her feeds from a bottle and continue to gain weight. Until now Annie has been too premature to know how to do the "suck-swallow-breathe" skill. It is just about time to start. The doctors want her to start the bottle/breastfeeding journey this week. It will start out as a very small amount (like a teaspoon) and go up as she is ready. Her feeding tube will be left in and the feeds will slowly transition to bottle. Only Annie can control his step. I pray that she "gets it" and is successful.

It's been 39 LONG days since Annie made her way into our lives. Our journey to get her home is definitely not over. Annie has some big hurdles to overcome. However, I am starting to see the light at the end of the (sometimes very dark) NICU tunnel! Thank you for the continued thoughts and prayers! Now here are a few pictures of our sweet girl.