Showing posts from September, 2021

9/30 NICU Day 38

Even though Olivia has continued to have events and require the extra oxygen, today was a really good day.  On my way to the hospital I was thinking about how she has required more oxygen. Not much more, 23-25% FiO2, but she isn’t on room air as often as she was even a few days ago. I don’t know why I think about negative aspects of this situation sometimes…but by the time I got to the hospital I was feeling emotionally drained. I said a quick prayer for Olivia and for my anxiety and headed into the hospital. When I got to her room, one of our primary nurses (always makes me feel better seeing our primaries!!) was starting her care with respiratory. They had Olivia’s CPAP off and without oxygen Olivia’s vital signs were stable. For about fifteen minutes while they cleaned her face and assessed her skin, Olivia only required occasional breaths from the CPAP. I was able to get a wonderful look (& some really good pictures of Olivia) without the tubes, hat, or other devices covering u

9/29 NICU Day 37

  Today is a fairly short post…hopefully the next week will be short posts as we continue through this wait and watch period.  Olivia has had fewer events which is a huge praise. However, she did not spend as much of the day on room air as the last few days, requiring between 23-25% FiO2. She has grown in weight which is wonderful. Although her weight has improved her growth velocity is slowed. The doctor is adjusting her sodium chloride supplement and continuing to adjust her feed volume based on her weight to hopefully help with this.  Kevin and I both were able to hold Olivia today during our “shifts”. With both of us back at work we are still trying to cram in as much time as we can with Olivia-even if it means we go separately. It is nice, though, to have her all to myself in the mornings-so I don’t mind too much :)  Just continue to keep us in your prayers and in your thoughts. It’s an exhausting season of life right now even when Olivia is having good days.  Colossians 1:9-12

9/28 NICU Day 36

  Olivia had a fairly good report today.  The change in caffeine dose and frequency seems to be helping keep her heart rate steady as well as decreasing the frequency of events. In the last 24 hours she may have had 3 events total. Huge improvement!  She is still growing but her growth has slowed down significantly. Several days ago she was jumping up by 20 or so odd grams. The last two days she only increased about 10 grams total. Still growing which is great but the doctors are trying to maximize her feeds and calories to get her back on track. Hopefully with some adjustments she will start gaining weight again quickly. She’s still doing well though, so I’m trying to take every small win I can-especially during this wait and watch period. We received a most appropriate new gift for Olivia today from her cousins…I have already read it and to be honest can’t wait to read it to Olivia tomorrow. It’s such a cute book. I can’t wait to see if this little Olivia pig in the book is going to

9/27 NICU Day 35

  Today was a really decent day at the hospital. No changes for Olivia other then increasing her milk drip to 7ml an hour. The feeds increase based on her weight so it still seems like such a small amount. BUT she is up to 2 lbs 5 oz! She definitely looks bigger-even though we see her every day. I have started to notice especially in her face (specifically her cheeks).  I had such a great time snuggling and reading to Olivia today (and chatting with the nurse) that before I knew it I had spent almost 6 hours at the hospital. It felt really good to feel like I finally had a day to just relax and take all the time I wanted with her- & her without having hardly any episodes!  We are kind of in this wait and watch time period again. The next big milestone being around 32 weeks when hopefully she is able to trial no CPAP and when she has her first eye exam. So until then we will continue to take each day as it comes…remembering to focus on the positives. Oh and of course spoiling Olivia

9/26 NICU Day 34

 I know I skipped a day yesterday. I do feel guilty. We were celebrating our anniversary and I typically type up my blog posts in the evenings. But last evening I was being treated to a nice dinner and with no real updates figured I’d wait until today. Olivia’s heart rate elevated throughout the evening and night. The second dose of caffeine was stopped, which in turn lead to more episodes of apnea, Bradycardia, and desaturations. The doctor who was on this morning was the doctor who delivered Olivia. He hasn’t seen her for 33 days-boy was he amazed at how well she’s been doing! I was encouraged by his amazement and excitement at her progress. He explained that the next two weeks or so one of the most important things is nutrition and growth. The brain and lungs are still developing and figuring out how to function independently from me (she would be doing a lot less if she were still in the womb essentially is what he was saying). So, while we will have some adjustments to the bubble

9/24 NICU Day 32

29 weeks (corrected age) and Olivia has gained more weight today! She’s up to 2 lbs 3 oz. AND it’s accurate considering she had a huge blow out right before she was weighed. Instead of Kevin…this time I got conned into changing the diaper. Although she’s small it is still a feat to put a diaper on a squirmy baby.   Olivia’s apnea, Brady, and desat events/episodes continued today and have been since last night. The night shift team decided to restart her caffeine so she is back on that twice a day. She has still been able to mostly stay on room air which is impressive. With restarting her caffeine the team will have to continue to watch her heart rate. For now though, the risks vs benefit are that the caffeine will help to lower the amount of apnea events.  So overall no big changes in medicines or care-really happy that the doctor still calls her a “stable” baby during rounds. Also happy that I was able to kangaroo with her for a total of 4 hours today. It was so hard to leave the hosp

9/23 NICU Day 31

  Had a wonderful day today! Olivia has hit a big milestone. She’s 2.01 lbs. We are thrilled! Kevin thinks that he can tell she weighs more when he held her this evening. He said his arm fell asleep, but this could just be my husband teasing me. To me, she still felt like my tiny little nugget when I held her this morning! Although she has continued to have few brady/desat events, she has remained mostly on room air (21%) since yesterday evening. Hopefully she will have less (or no) events and be able to wean back down on her CPAP settings to where she was last week. There still is no explanation other then it’s just what preemies do.  Very excited to be off work the next few days and spend some longer days with Olivia. She has been tolerating being able to be held for longer periods of time. (A little over two hours this morning!). Skin to skin (or kangaroo care) is encouraged so I am very much looking forward to a long weekend of snuggles :) 

9/22 NICU Day 30

I am happy to report an uneventful day. Olivia was able to wean down on her oxygen back to room air (21%) for most of the day. We were told she had very minimal events throughout the day. Her weight is now up to 1.95 pounds…her feeds have been increased so I am confident she will finally reach 2 pounds by tomorrow evening when she is weighed again.  I feel so relieved to have such a short post. I can’t believe it has been essentially a month that’s gone by since I started making posts. Still have lots more time ahead of us in our NICU stay…but we continue to be thankful for everyone’s prayers, for the care Olivia is receiving, and for all the love and support of our friends and family! 

9/21 NICU Day 29

Olivia continues to be stable on her new CPAP and oxygen settings. She has required more oxygen with her new settings. But as discussed with the doctors yesterday, this could be attributed to her belly pushing on her lungs. Her events have decreased from this weekend so the changes in her settings have definitely helped. The doctors today decided to go ahead and get an ECHO of Olivia’s heart (ultrasound of her heart) to evaluate her murmur. According to the results she does have a small hole (PDA) but it is very common. Typically these close on their own in full term babies by a week or so of birth. So they will continue to just monitor the murmur. Her heart function and valves are otherwise functioning perfectly which is wonderful news. Kevin participated in Olivia’s cares today twice and we were able to kangaroo care (or I just say snuggle) with her for two hours each. Olivia did wonderful and really seemed to enjoy it. I feel like she’s starting to get more expressive…even with her

9/20 NICU Day 28

 Today was a good way to start the week. Olivia and I got to snuggle for almost two hours without any events. She has had a few events (drops in her oxygen saturation and heart rate) through the day, but we feel reassured from the doctor this morning that this is very typical of premature babies. Olivia has been doing exceptionally well for the last couple weeks-exceeding expectations. The last few days she has exhibited typical behaviors of a premature baby of her gestational age. Although we are reassured, of course we would rather her continue to be exceptional. But we have expected a lot of her and her little body…all that she would not be doing had she not been born 4 weeks ago!  The doctors did get a chest X-ray today that showed no difference from last week. Her belly still has lots of air (they call it a CPAP belly) and takes up space that cause her lungs to not expand as easily. Even with the extra air, the doctors went up on her CPAP setting since she has required a smidge mo

9/19 NICU Day 27

  Olivia has had more trouble today avoiding desats, apnea, and bradycardia episodes. Kevin and I arrived at the hospital with tons of questions and concerns from yesterday. The doctor spent quite a bit of time discussing our concerns and answering our questions which we both appreciated. I think she was more concerned about Kevin and I then Olivia. The doctor explained to us that this is a roller coaster time (which we have heard before) and that a lot of fine tuning taking place over the next couple weeks. For example, decreasing the caffeine dose to lower her heart rate may cause more apnea events. Balancing between the benefits vs risks is what the doctors are working on now...and have been since her birth. I think because we were seeing such leaps in her growth and milestones that these little bumps are difficult to Kevin and I.  Overall though, Olivia is doing well. The whole team continues to feel that she is stable and doing very good for her premature age. Olivia did gain more

9/18 NICU Day 26

I think all three of us, Kevin, Olivia, and myself, all felt out of sorts. It was just a very “off” day.  When I got into the hospital this morning, I noticed Olivia’s heart rate was still elevated. I asked the PA about it since the reason it was elevated had been explained originally as her being anemic…recall the blood transfusion. The PA stated that they were going to lower her caffeine dose to see if that would help her heart rate. I’m not sure if I ever explained that-but she’s been getting caffeine doses twice a day to help avoid apnea events. I asked again if there was anything else for us to be concerned about..such as infection…to which she replied that Olivia was doing really great and other than elevated heart rate they had no concerns. Olivia had even gained weight, she’s 1 lb 13.6 oz today.  So I was feeling pretty ok…but then when holding Olivia she had a hard time maintaining her oxygen. We were missing one of our primary nurses so this didn’t necessarily ease my anxiety

9/17 NICU Day 25

We’ve hit the 28 week mark! Time has flown by.  Olivia is doing really well post blood transfusion. Her heart rate is much better, her color looks better, and her oxygen levels have improved. She has only had one apnea event/episode...otherwise has had an uneventful day.  With her blood transfusion her weight increased quite a bit. This is mostly due to extra fluid. The doctors gave a dose of lasix (which is a medicine that basically makes you pee out all the extra fluid) so tomorrow we will see what her accurate weight is.  I was able to get off work early and got to spend a lot time with Olivia today. I really enjoyed being able to snuggle her for so long. The nurses say that she has been doing really well and attribute some of that to how often Kevin and I have been in to see her, talk to her, and hold her. In a time when I feel as parents we can’t do much…it feels really incredible that the small amount we have been able to do is making a big impact. 

9/16 NICU Day 24

  This morning I thought I’d be starting this post with a statement similar to the last few days. When I first walked in to Olivia’s new room, the first thing I noticed, other than the size, was the big sunflower picture.  I have always loved sunflowers (I took pictures of some to start decorating Olivia’s room at home..and used one to “decorate” this blog). I guess I just felt this was a good omen. Olivia was resting peacefully and everything seemed really good.  The nurse mentioned that Olivia’s heart rate had been elevated throughout the night and early morning. She also mentioned Olivia had seemed a little warm to the touch. She didn’t have a fever but just wanted to make me aware that the team may discuss it during rounds.  Well discuss they did. The doctor felt Oliva may need a blood transfusion due to low blood counts and her heart rate (a symptom sometimes related to low blood counts). A blood transfusion had been mentioned to Kevin and I before (I signed a consent for it on Ol

9/15 NICU Day 23

We thank everyone for all your prayers and encouragement! Olivia is continuing to do really well!  Rounds with the doctors today were quick with not many changes made to Olivia’s care. The best kind of rounds! She is continuing to grow…but a little slowly. She will start to get extra calories in her fortified milk drip to help her to add on the pounds.  She is still doing well with her bubble CPAP-only requiring extra oxygen occasionally, but mostly remaining on room air. Probably the most exciting news for the day is the surprise room change! This morning the charge nurse came to speak with me stating that in order for the floors to be waxed…Olivia (and the other four babies in her wing) would be transferred to another pod (area) of the NICU. Not a big deal. Well…when Kevin went to go visit in the evening, he found Olivia had been moved to the “garden” area. From what we had been told earlier in her NICU stay, the garden area is for stable babies to hang out and grow until they go hom

9/14 NICU Day 22

Today will be another short post! No acute events which is wonderful news. Olivia continues to remain stable on her new CPAP settings. According to the doctor she will keep the CPAP until 32-34 weeks corrected (so about 5 weeks from now which I mentioned yesterday). She also gained some more weight…now weighing 816 grams so about 1 lb 13 ounces. I’ll try and post some pictures later this week. It’s hard for me to tell a difference unless I look at much earlier pictures. But she does look bigger!  I got to snuggle with Olivia before work today. Probably the best way to start the day! Kevin was able to hold her this evening and agrees it makes the day so much better. I’m continuing to pray she stays strong and doesn’t tire herself out. It’s so nice that she has been stable enough to hold her more than once and for long periods of time. My heart just explodes every time I get to have her so close to me without the barriers of the incubator walls. To be able to talk to her, sing to her, an

9/13 NICU Day 21

  I can’t believe you are three weeks old today! It’s incredible to imagine everything that has taken place in less than a month.  Little Olivia made some more strides today. She’s slowly increasing in weight…now 803 grams or about 1 lb 12 ounces. She is continuing with feeds at goal for her weight!  No events in a little over 24 hours so the settings on her bubble CPAP were weaned down. According to the doctor the CPAP will stay in place for about the next five weeks. I can’t say that hearing five weeks didn’t immediately send me into a tail spin…but Kevin reminded me that for one, it’s five weeks out of the three months they told us to expect she would be admitted…and two, she still needs the support but she’s doing well enough to be on MINIMAL support. I think she’s been doing so well I forget she is doing so much more than what she would be expected to be doing at 27 1/2 weeks if I were still pregnant.  Olivia is also being weaned down on her hydrocortisone (due to the adrenal insu

9/12 NICU Day 20

  Another absolutely wonderful day! Olivia is doing very well. Essentially no changes and the doctors seem to just fly through rounds.  Her feeds have been increased and she is almost at goal for her weight-which by the way is up to 780 grams or 1 lb 11.5 ounces. Still doesn’t sound like much but we are heading in the right direction.  Kevin and I both got to snuggle with our little bundle again today. We reread the books from Olivia’s cousins and got to read several stories from Grammy McVerry’s classic nursery book that she’s  had since childhood!  I’m so thankful for days like today. I can’t wait to be able to read and snuggle with Olivia at home. I think that time will get here before we know it!

9/11 NICU Day 19

  Today was such a good day. Olivia and I snuggled for almost two hours in the morning. I read to her, sang a little, and talked to her. She pretty much slept the whole time, but when I put her back in her incubator for care time..she was wide awake! I took a video but can’t figure out how I posted the last video so unfortunately it isn’t working. It looked almost like she was trying to smile! Maybe just a reflex but I like to be blindly optimistic.  In other news, Olivia is up to 1 lb 11 ounces. Due to her reflux she is on continuous feeds and almost at her goal feed amount. The doctors also changed the type of feeding tube to combat the reflux. Her tube is an OD tube (oral duodenal so it goes a little past her stomach). The continuous feeds and new tube seem to have helped. Her brady and desat episodes decreased significantly today from yesterday. She is still doing well on her bubble cpap and for most of the day stayed at 21% (room air). Also her PICC line was removed this morning.

9/10 NICU Day 18

To be honest today felt kinda blah to me. I’ve had a hard time processing my feelings. It has not been the hardest day since three weeks ago but it also wasn’t the easiest.  Olivia is doing great as the PA and NP explained. (We missed rounds this morning). However, she has had several “Brady-desat” events..more than usual. This is when her heart rate drops-typically below 100 or if her oxygen saturation drops below 85. The team plans to remove her PICC line but want to “wait to see if anything is changing”. UGH. Absolutely unsettling. The healthcare provider in me immediately went to…’okay what could be causing these changes what are we doing about them’. As a mom…all I heard was the ‘wait and see’ which rattled me. What also didn’t help was as I was holding her I witnessed a few episodes of her oxygen dipping, and the nurse…somewhat frantically…trying all the things she could to “fix” it. Of note Olivia does not tolerate the oxygen prongs (the respiratory therapist alternates a little

9/9 NICU Day 17

Another short post today! I almost didn’t make a post today because of the lack of updates…but two reasons I’m posting anyway:  For one, it may be tiring reading the same short posts for anyone keeping updated, but for me, I know there will be times I need to remember and be thankful for these uneventful & steady days. Second, Kevin did take pictures when he was visiting while I was at work and I had to share!  So updates first…Olivia is (slightly) past her birth weight! 745 grams or 1 lb 10.2 ounces! All bundled up she looks like the cutest little potato…I can’t wait until she has those chunky baby cheeks, arms, and legs!  Olivia has also continued to do well on her bubble CPAP. She does have dips in her oxygen saturation, requiring an increase of oxygen after she has her feeds (milk drips). According to the doctor this is normal and they are not overly concerned. She will increase to her full feeds in two days as long as she continues to tolerate her new regiment. Full feeds for

9/8 NICU Day 16

  Oh Olivia! You are so loved!  Another short post today :) Olivia has been doing wonderful on her bubble CPAP. She has remained on room air (or in other words 21% FiO2) or has required minimal oxygen (23% FiO2). Her weight has increased to 720 grams or 1 lb 9.4 ounces roughly. She is SO close to her birth weight! Her milk drip was increased today and according to Kevin she did great with the increase (He got to snuggle her this afternoon while I was at work-lucky dad!).  I’ve been so thankful for my work family and all their support. They have made the transition back so much easier. So many people have asked about Olivia and shared encouraging words. She has no idea how much love is surrounding her! As for Kevin and I we feel it and couldn’t be more thankful. In talking about the last two and a half weeks, it hits me just how insane, scary, and overall emotional it all sounds. And yet…I have never felt more calm and peaceful in my life. I’m usually so anxious and worry over every

9/7 NICU Day 15

So thankful that today is a short post!!  Olivia was placed on her bubble CPAP this morning right before I left the hospital for work. She was tolerating it so well! The nurse promised to send me updates-knowing I was anxious to leave her after a big change.  I got my first update about 2pm saying Olivia had been breathing not only on her own (with the CPAP supporting her lungs opening more fully) but also on room air. The bubbles are much more gentle on these little babies, according to the nurse. The  fact she is tolerating it not only helps aid in the process of eventually weaning all the breathing apparatuses BUT makes for a more comfy baby.  Another praise is that Olivia is now 710 grams…or about 1 lb 9 oz (according to Google conversion I can’t do math-sorry!! to my math teacher mother). That is almost her birth weight!  I actually got off work early today and was able to meet Kevin back at the hospital to visit with Olivia. When I got to the NICU I saw Kevin was holding our swee

9/6 NICU Day 14

I can not believe it has been two weeks since little Olivia graced us with her presence.  I am very happy to report yet another boring day. Her weight remained the same at 690 grams. Her milk drip was increased to 6ML every four hours which she tolerated throughout the day without any problems. We are all really hoping she starts to gain some weight soon!  Labs that have come back from all the excitement two days ago have not showed any indication for infection! So Olivia's preventative antibiotics were stopped today. As I mentioned yesterday, she will continue the steroid medication for the adrenal insufficiency issue but has already started to wean down from the large dose.  I don't have a picture, but I did get to hold her for about two hours today. I can't explain just how good it feels to snuggle that sweet little nugget! She did really well the entire time and we both actually fell asleep-this time because we were tired, not because Kevin was reading about car parts. 

9/5 NICU Day 13

After yesterday, I am pleased to report a big fat boring day for Olivia! If it were up to me, and I know it isn't, I would just have boring days for the rest of our NICU stay and be perfectly happy.  Our little nugget is back up to 690 grams today. I forgot to mention her weight in the last few posts. It has gone up and down the last two days, but seems to be going up again. After all the excitement yesterday...and the tummy troubles two days ago she is starting again on a slow milk drip (I know people asked me-and she has remained on IV nutrition throughout her NICU admission. The milk is in addition). We are really hoping that her little tummy can handle the milk and that between the two types of nutrition she starts to pack on the pounds.  During rounds, the doctor was again very surprised with how well Olivia is doing, saying her response to the medicines was pretty incredible. Because of Olivia's quick turn around the doctor feels confident it was adrenal insufficiency and

9/4 NICU Day 12

  I've learned quickly to wait and write these updates in the evenings. This post is a long one, apologies!  Our little Olivia continues to keep us on our toes.  Today started off somewhat slow for us. Kevin and I both 'slept in' until 8:30 meaning that we were going to be late making it to rounds this morning. It just so happened that while we were in the parking lot I got a phone call from the NICU doctor. She called wanting to give us a heads up that Olivia had "hit a bump in the road" and that we may see a lot of people at her bedside when we arrived. She went on to explain that during the early morning hours it was noticed by the nurse that Olivia had dry diapers. By her third dry diaper the nurse was concerned. Then Olivia's blood pressure began to drop. The whole team immediately took action and started Olivia on medication to help her blood pressure and to help get her kidneys working (I'd go into detail on the specific medications but let's ju

9/3 NICU Day 11

Today was a big day for Kevin! Olivia and dad were able to snuggle for almost two hours. Can’t say I’m a tad jealous that she did better with her dad than she does with me. However, we’ve known since day one…she’s a daddy’s girl!!  Olivia had another strong day today. Her X-ray of her belly   and intestines came back normal meaning she is able to start “eating”. Because of yesterday’s tummy troubles, her milk drip was restarted at a very slow rate. She tolerated the drip without any difficulties all day! She has also been able to be weaned down on the cpap settings. During rounds, the doctor mentioned next week trying her on a “bubble” cpap. This would be another step toward having all the oxygen and back up oxygen removed! To be honest, all the respiratory stuff is somewhat confusing to me, even having medical knowledge. Just knowing she is going in the right direction and continuing to breathe well is more then I can ask for! Sweet girl was very fussy when we were leaving this eveni

9/2 NICU Day 10

Today was the first day that we experienced the “roller coaster” the doctor had been referring to when caring for babies that are in the NICU. This morning, when we arrived for rounds, we were informed by the nurse that rounds were done really early this morning. She then said “also…I wanted to let you know the team decided to stop her feeds today because she had some blood in her diaper this morning.” She then went on to explain this was common in preemies and that an X-ray was done with nothing abnormal noted. Of course she messaged the doctor to come see us to give his updates and explanations. While we waited I immediately went into worry mode. I cant explain why my first instinct isn’t to pray, or to thank God for everything thus far that He’s done, or, as a nurse, to NOT PANIC. Kevin was a cool as a cucumber which only made me jealous. While we waited the nurse suggested that we do our kangaroo care. It eased my mind to think that the nurse felt Olivia was stable enough for me to