The final countdown!

While the past 29 days have seemed to drag by and be full of the same information and routine, it seems like the past 3 days have finally changed the monotonous activity! 

On Saturday, Olivia weighed in at 6 pounds 8oz and was moved up to 50cc for 6 feedings and stay at the 2 ng feedings. We talked with the doctor about the criteria for her to be discharged, as we felt like things kept changing on us and we were being told different information by different people. We found out the magic formula and what else needed to be done to get us outta here!

Sunday, I was in brookings most of the day for a swim team board meeting but phil was in Sioux Falls with Olivia. She continued to do well with her feedings and the option to take out her ng tube was discussed. She weighed 6 pounds 9oz and continued with the feeding schedule from Saturday. Before I left brookings, I packed a bag of clothes for the week as I was on a mission to not leave the hospital until my daughter left! When I arrived at the hospital, one of the nurses commented on how much I had packed and when I told her my mission, she laughed. Little did she know how serious I was!

Monday was a great day! Olivia weighed 6 pounds 9.5oz and was needing 62cc every 3 hours. I had spent the night in her room on Sunday night and she was very active and crying before her feeding time. I talked with her night nurse about how I really disagreed with feeding her every 3 hours since I knew she was hungry. And i talked with her about wanting olivia to get used  to eating without the ng tube, since she wouldn't be able to have that once we left to go home.  The nurse agreed and let me feed Olivia a little earlier than scheduled for her feedings. Since she was taking so much at each feeding, the nurse called the on-call doc at 4am to discuss what was going on as well as my concerns. The doc  then changed the orders to taking the full volume (62cc) 8 times a day! So we could now feed her as much as she wanted each time and not have to do the 2 ng feedings. While it didn't solve the 3-hour rule problem, it did get us one step closer. Then at 11am during rounds, the doctor came in and discussed her feedings (it was a new doctor that we hadn't had and I love him! He actually listened to me and talked to me instead of rambling off words to the nurse practitioner). I explained that she was waking up before feedings , crying and showing me she was hungry. He looked over the nurse's notes from the previous few days and agreed that she was doing well feeding and waking up before every feeding. Then he said the magical words of 'let's take out that ng tube and see how she does eating whenever she wants.' So, we were finally allowed to do the trial run and move one step closer to discharge!


I am the champion!

So, here we are today. Just waiting and hoping. And waiting some more. We did the 90 minute car seat test and she had no breathing problems, so that's good for discharge. Phil and I have watched the 4 videos, so that's good for discharge. And now we are in the process of eating whenever we want and hopefully gaining weight. And then, discharge!!! We were told there is a chance for getting the okay for leaving tomorrow (!), but it could also be Thursday. So in the midst of all this chaos and excitement, I am now trying to run errands and pick up the items we still need now that we'll be home soon :) I just cannot even say how happy I am to think that we will be able to spend Easter at home as a family.
So, continue to pray for great news and a baby that has gained weight!

Passed my car seat test like a champ!

 

Happy 4 week birthday!

Day 25

I used to think that I would get so much done when I was at the hospital because there was nothing to do. I now know different. I ask myself every night, 'where did the day go?' Between feedings every 3 hours, talking with the doctors and nurses, pumping, napping and of course cuddle time, it seems like the day just gets the best of me. I was talking with another mom of a preemie yesterday and we both commented that it almost seems like a completely other world in the NICU. Where at the same time, a day can feel like a year and a week can pass in a blink. So, I am still behind in school work and other things but I have to look at the bigger picture and realize that my first priority is this adorable little girl and I know I won't be disappointed at the end of the day when I spent many hours cuddling with her instead of reading and reviewing articles for class.
The past few days have been full of frustration, improvements, smiles, tears and everything else. Olivia has stayed above the six pound mark and she is getting more comfortable with feedings. On Tuesday, she was moved back up to bottling six times a day, but she was still at a max of 25cc for each feeding. We still continue to fight about the three hour rule with the docs since Olivia has been consistent with getting up about 2 to 2.5 hours after her last feeding and fussing. I feel that if she is giving me cues that she wants to eat and I'm not giving it to her, I'm punishing her for telling me what she wants. After receiving a few messages of encouragement on Facebook, I spoke up yesterday. Dring rounds I asked the doctor 'so when can I treat my child like a real baby?' Probably not the most tactful way to approach the subject but I'm sick of this three hour rule. The doctor just said that they want the babies to rest in between feedings so that's why they do the three hour business. Once Olivia hits that magic 40cc mark and she gets the ng tube out, we can go to feedings whenever she needs/wants. So we wait yet again for another thing...
On a more positive note, not only was she moved up to six times a day, she got up to 35cc at every feeding! And she knocked it out of the park by downing her first few feedings in less than 15 minutes each time! I am waiting on the CNP and doctor to come and do rounds this morning but I have hope that we'll get more good news today.

Not only have we had excitement with Olivia, mommy decided to stir things up last night. I haven't been feeling well the past two or three days and at times, it feels like the world is spinning or that I have really low blood sugar and am really weak (even though I would have just had something to eat). While running errands yesterday, I was having one of those spells so I took my blood pressure and it was high. I headed back to the NICU and asked one of the nurses to take it. It was a lower but still kind of high, so I called the after hours nurse and explained my symptoms and gave her my history. Since it was about 6:30, the office was closed so she advised me to go to the ER. So, away I went from one end of the hospital to the other (the joke is that I want to visit all of the departments at Sanford and I want to meet all of the doctors in the OB  practice). After 2 hours in the ER with my blood pressure starting high, then  going low then back up again and a few labs, the doctor said I was good to go since nothing was coming up as abnormal. I am to visit my doctor's office today for another BP check. I have been feeling well the past three weeks and the BP meds that they out me on we're working, so I just don't know what my body is doing! It's probably the stress and emotions of being here, so I feel like it's best for everyone if they just discharge Olivia and let us all go home :)

3 weeks and 6 pounds!

Daddy's lucky lady

Mommy's little lucky charm

I'm a bit behind in things, but the biggest news is that our little girl is 3 weeks old and as of Tuesday morning, she is a whopping 6 pounds! Specifically, she is 6 pounds 0.5 ounces :)

On Sunday, I was here for just the morning as I had our swim team banquet on Sunday afternoon. I left around 11a, but Phil stayed here for the afternoon. During rounds, the doctor discussed that Olivia wasn't progressing as well as they wanted and that the plan was to cut down her feedings. So, she was decreased to 25cc at every feeding, as well as moved down to just 4 feedings a day by bottle (and the other 4 by NG). When Phil called and told me that, I was extremely angry and upset, since I feel like she needs to have feedings more frequently (around every 2 hours and not 3). After lots of tears and some vented words to an empty house, I was able to calm myself down and get to the banquet. Phil and I talked when he got home later that evening and came up with a game plan for the week.
During rounds, the doctor mentioned that Olivia was experiencing some bradycardia and breathing episodes at night (first time we had heard of this) and they didn't want to make feeding a traumatic experience for her. While we agree that we want feeding to be positive, it would have been nice to know why the feedings were going to be changed before they were. When she does breast feed, she gets weighed before and after she feeds so they know how much she had.  We have not been convinced that the scale was accurate, since some days Olivia will do really well and the scale says she looses weight and other days she doesn't do well and the scale says she took 80cc (which, if that gets her released any sooner, I'll agree with, but there's no way that's accurate). So Phil asked about how often the scale is calibrated and they told him that it was accurate and didn't want to discuss it anymore.
I've received a lot of comments on how positive I've been through this experience and let me tell you, I hit that wall on Sunday. I felt like there was not a light at the end of the tunnel and that for the first time, we were moving backwards. So, we decided that one of us should be here as often as possible. I felt that since we had never seen a breathing or heart rate episode, I would spend a few nights to see what her nighttime routine is like. I got to the hospital yesterday around 11:30am and have stayed/will stay here until 4p tomorrow. That way I can see 2 nights of her activities and be around her 100% to tell the doctors how things really are. Phil will be here all day tomorrow, I'll be back on Thursday and both of us will be here Friday. I'm just so exhausted with everything. We are so ready to have her home. I know she needs to be here to get strong and healthy but it is so hard to believe with my heart that she wouldn't do as well, if not better, at home. I want to feel like a real mom and have a routine with her. I want to get up with her at night. It is so hard to be home and have an alarm clock wake me up to tell me to pump. It's so tempting to just press snooze and go back to bed. Last night was great to be woken up to baby girl noises and get up to pump and then snuggle with her. 

Monday was her 3 week birthday and she was 5 pounds 14.1 oz. The speech therapist came again to reevaluate her with her feedings. She commented that while Olivia doesn't have the whole suck-swallow-breathe routine, she looks better and is able to now do a suck-swallow motion. We decided to keep her on the preemie bottle and continue until Phil and I feel like she is ready to switch to the other bottle. Olivia has the tendency to put her fingers in her mouth when she is hungry and yesterday when the nurse was getting her bottle ready, Olivia put her fingers in her mouth. The nurse said that she had heard about some babies that would do repeated sucks with their fingers in their mouth and no sooner had she said that than Olivia started doing that! She had two fingers in her mouth and for about 20 seconds, she repeatedly sucked on them (instead of just putting them in her mouth and having them stay there).
Today was the day we hit the 6 pound mark! She is now up to 6 pounds 0.5 ounces. During rounds, I discussed with them that Olivia is still waking up about 15-30 minutes before her scheduled feeding and crying or sticking out her tongue or putting her fingers in her mouth. They changed her schedule back to 6 feedings by bottle and 2 feedings by ng tube. She still is limited to 25cc, but at least she can bottle more. It's still frustrating to know she can only eat every 3 hours. Realistically when we get home, she will be eating a lot more than that (as she should), so I want to be able to start her on that track now.
But for now, I'll continue to stare at my sleeping beauty and dream of the day that she'll be home with us :)

Friday and Saturday

Yesterday, Olivia weighed in at 5 pounds 9.9 ounces and today she's a rocking 5 pounds 13 ounces! She was eating 53cc at every feeding yesterday and with the weight gain, she is up to 55cc at every feeding. She remains at 30cc by bottle at feedings and then receives the rest through the ng tube. The only change that did happen was that yesterday, I was talking with the nurse practitioner about how Olivia will sometimes wake up 30-60 minutes before her scheduled eating time and will get upset and cry and move around. She will stick out her tongue and put her fingers in her mouth, so I thought those were cues to let us know that she is hungry. But sometimes she would do that for the 30ish minutes and then when it was actually time to eat, she had exhausted herself and didn't eat a lot. The nurse practitioner agreed with me and said that while Olivia is scheduled to eat every 3 hours, if she is giving us those cues, she should be able to eat. So, she is now ordered to eat when she is hungry, but to not go longer than 3 hours between feedings. Hopefully that will help her get more out of each feeding and get her to the 40cc mark! 

A speech therapist also came by yesterday to see if there is anything else we can do to help Olivia with the feedings. She recommended a different type of bottle, so we've been trying that for the last 24 hours or so. Olivia is doing better with pacing herself (she would race through the first part of every feeding and sometimes forget to breathe) and is getting slightly more with each feeding. The speech therapist said they look for babies to have a routine of suck, swallow, breathe when they feed and Olivia's is more like suck, suck, suck, swallow, swallow, swallow, breathe, breath, breathe. So it could be that Olivia is just exhausting herself and not knowing how to correctly pace and eat. The majority of her bottle feedings in the past 24 hours have all be 20cc or more, so we're hoping to see some more increases soon!

37 weeks

Today marks Olivia's 37 week gestational age! She got to celebrate by having individual attention from both parents :) phil kept to the normal schedule and was here yesterday afternoon and this morning and I switched things up by coming yesterday morning and this afternoon. I went back to class last night and then had a project to complete today that was worth 20% of my grade, so I decided it was in my best interest to be in brookings today! 
Olivia had an exciting night last night as she decided to take matters (well, rather her ng tube) into her own hands. And the little punk pulled it out! Phil had just finished holding her and laid her down and right after he turned his back, he heard her scream. When he looked, she had completely pulled out the tube and pulled off the tape from her face! The nurses put it back in (phil did ask if we could keep it out, even though we knew that wasn't going to happen) and thankfully it's on the other side of her face. So now we can all see her dimple (which phil is not very proud of.... according to the nurses this afternoon, he was showing her dimple off to anyone that walked in the room) :)
Today and yesterday, she has been pretty active. It just feels so good to see her looking around more and more. She remains at 30cc by bottle and 22cc by ng tube for 6 feedings. But today she weighs in at 5 pounds 9.2 ounces! She continues to look better and better each day. Since she is still having troubles finishing all of her feedings, a speech therapist is going to be here tomorrow to see if there is anything else we can do to help her finish. She also does not burp very well, so that could be another issue with the feedings. For her 8p feeding tonight, I was able to get her to take 23cc, which is the most she's ever done with me. 

So, we continue to give her love and spend lts of time snuggling with her! 

Tuesday

We got to Olivia's room around 8a this morning and she was starting to wake up, so we continue to rejoice that she is waking up on her own around feeding time! She did her 8a feeding by bottle and daddy was able to help her take down 17cc before she got sleepy again. For the next few hours, she was adorable (as always) and slept and made cute little noises in her sleep. For her 11a feeding, she breastfed and according to the scale, she took in 30cc, but the nurse and i weren't sure that was accurate. If it was, I will gladly take it though!! Her doctor came and talked with us about her progress. With her weight gain (last night she weighed in at 5 pounds 6 ounces!), they moved her up to 51cc at every feeding (a gain of 1cc, but hey, we'll take every little bit)! Since Olivia has plateaued with her feedings, they will keep her at 25cc by bottle at each time, and then 26cc by the ng tube. However, they are trying to get her to know that she can't rely on the ng tube so she is now getting 6 feedings with her bottle and ng tube and 2 through just her ng tube. Previously, she was getting 4 feedings with a bottle and the ng tube and then 4 feedings with just the ng tube. She is gaining weight and waking up before her feedings, so those are two very positive things. However, getting her to 40cc by bottle at every feeding is the main goal. The doctor said that looking at Olivia's progress thus far, she would guess that Olivia will possibly be discharged in 10-14 days. She again emphasized that we can't keep that date as a rule, but it will give us a guideline as to what to expect. As hard as it was for me to hear that, it was the reality I needed to hear. In my mind, I thought there was a possibility of her being home by Monday (her 3 week birthday), but now I know it will be a little longer. It's hard to know she needs to stay there to get big and strong and healthy, because in my mind, I feel like it would be better for her to be at home with mommy and daddy. But, we'll continue to enjoy our cuddle time with her, no matter where she is (and it will make cuddle time at home that much sweeter)! 

Monday

Happy Monday! Today, Olivia remains the same as she has been in the previous days. She has been sleeping most of the day, so we're hoping that means she is resting up to grow lots in the next few days! We got here about 2p and she was crying and moving around, so we were hopeful that she would take a lot of her feeding. Phil did her feeding with a bottle and she took about 12cc, so she finished the rest through her ng tube. After that, it was snuggle time with mom :) This afternoon, we had family nap time, so all of us slept anywhere from 15 minutes (Katie) to an hour (Phil) and more (Olivia). For her 5p feeding, we were going to try and breast feed again, but Olivia was completely zonked out! We tried for about 15 minutes to wake her up, but she was not wanting to open her eyes. So, she took that feeding all by her ng tube. We are getting ready for her 8p feeding and will try a bottle again, so hopefully she'll drink it all.
Olivia is holding steady with her weight and is still 5 pounds and 2 ounces. She was moved up to 50cc at every feeding, but remains at 25cc by bottle. There won't be any changes with that number until she can finish all of her bottles in a 24 hour time period.

We'll be back tomorrow morning, so check back for any updates then!