Kalyssa 8 months – 2nd ear infection October 22, 2008

Last night was not fun by any stretch.  Kalyssa has had congestion since Saturday, but has been relatively normal other than asperating her nose now and then.  However, last night at 3 AM she began screaming and whimpering intermittantly with only 5-10 minute periods of sleep.  She was also shaking her head back and forth and I immediatly thought … ear infection.  Took her to the doctor and she does indeed have one in her left ear.  This time, they also prescribed numbing ear drops to alleviate the pain until the Amoxicillan starts kicking the infection. They also weigh and measure her every time so I have an official 8-month update on those.  She weighs 14 lbs 11.2 oz and length is 24.3 inches.

Other major milestones since her last post are that she still doesn’t seem to like Rice ceral much, with or without apples, but she has taken to stage 1 Sweet Potatoes rather well.  She does attempt to suck it off the spoon at first like a bottle, but by the end of each container she is usually opening her mouth for the next bite like a baby bird.  Not to good at getting off the spoon without my help yet, but is swallowing it instead of blowing raspberries or spitting it out.

Additionally, she has begun reaching for the pulls on her swing to turn the lights and music on as well as for objects on her carrier.  YEAH!  She’s finally figured out her hands are for more than chewing on.  Good going girl!

Brianna’s 3rd Birthday October 16, 2008

I know that so far this blog has been mostly about Kalyssa, but her big sister Brianna was also a preemie of 5 weeks (weighing 4 lbs).  Brianna is now tall for her age and you would never know that she had any developmental delays.  We did recently have to get her glasses as apparently she is extremely far-sighted and it was causing her left eye to turn inward toward her nose when she was trying to focus.  Many call this lazy eye.  Daddy had this problem when he was around age 6 though – so likely it has nothing to do with being born premature.  Last weekend we celebrated her 3rd birthday with a Tinkerebelle party.    This year she finally got it.  She knew it was a birthday party and knew to blow out candles (twice because she loved it so much) and she LOVED everyone singing Happy Birthday.  This time last year she was still a little intimidated by all the people in the house, but this year she was excited by everything.

The one thing she is behind on, though I’m told she will do it in her own time, is potty training.  She will tell you when she has had a BM afterwards, but otherwise she does not seem inclined to use the potty at all.  Though she knows all about it and will sit on it … I’m told it will happen any time that she’ll just “want” to.

She can count to about 20, though sometimes stumbles in the teens, and doesn’t really know what they mean since if there is more than one ball there are two balls (even if there are eight).  She knows her basic colors and shapes really well and is getting better at coloring all the time.  The thing that warms my heart the most has been two-fold though.  She now will tell me she loves me when I put her to bed and sometimes she sings the songs to me that I’ve been singing with her at bed-time for the last two or more years.  She may stumble on a few words now and then, but she’s definitely been paying attention.  She will also initiate names of friends to pray for and family members during “pray time” and it’s oh so cute.

Brianna and daddy check out Tinkerbelle on her cake

Happy Birthday to my big girl.  You are closer to being 40 pounds instead of 4 now, but you’ll always be my little one.

Progress being made :0) October 14, 2008

Kalyssa participates in the local First Steps program to help with her developmental delays and today we had a visit from her physical therapist through that program.  I knew she had been increasing in mobility but was delighted to watch her turn her little body while on her tummy up to 90 degrees to keep her eyes on a favorite llight up toy!  Additionally, we have had a little success with solid feedings lately.  She won’t put up with it for long, but we have actually gotten some of it to go in and not come out lately. :0)

We’re working on getting her to grasp toys as well.  She did begin grabbing the little fishes on her swing over the weekend and she giggled with glee when that turned on the music and lights (though I’m pretty sure she doesn’t know she caused it with the pulling yet).  She’s very close to sitting up but hasn’t developed that reflex to put her arms down when she loses her balance.  Her muscles are very tight in her arms yet which is typical of preemies and part of why she is delayed on things that require her to move her hands far.  It is improving though and I look forward to how different she will be in two weeks when the therapist returns.  It seems there is something new every time she is here.  Yeah!

6-Month Update September 29, 2008

Kalyssa and Mom on 8/21/08 - Six Months Old!

We had her official pictures taken the following Sunday, but this shot was taken the day she was 6-months old.  Four days later we took her to her well-baby visit and she weighed 12.8 pounds and was 23.25 inches long. She didn’t like her shots (of course!) and unfortunately the pediatrition was again able to hear a heart murmer.  We have since had another echocardiogram and she does still have one of the two holes in her heart.  The good news is that the one in her lower-chambers/ventria has healed, but the bad news is that the one in her upper chambers/atria is still moderate in size.  It does not seem to affect her and the doctor’s are still choosing to watch and see if it grows smaller at this time.  We will have another echocardiogram at Riely in mid December to see if there has been any progress.  I promise I’ll post results!  Between six and seven months she has begun to sit up for longer with assistance and just this week has begun propping herself up with her arms when on her tummy regularly.  You can’t get her to sleep on her back at this point … she’s rolling over and around constantly!

Bonus Photo:  First Attempt to Feed Kalyssa Solids … It’s still not working, but gee she looks so small in that chair!

kalyssa

6 Weeks Old April 4, 2008

Everything is fine, but I did have a bit of a scare today. Apparently both the results from a head ultrasound and a heart scan for Kalyssa came back with some concerns. There was an area on the head ultrasound that was questioned as a blood clot, but the doctor reviewed this scan herself and having seen many preemie head scans over her career, she believes it is normal and not anything to worry over. However, she had results from St. Vincent’s on Kalyssa’s heart scan that are minor concerns. She had conflicting reports though and I had to wait a few hours to find out what exactly was up with her heart. It appears that Kalyssa has two small holes in her heart. I guess it is typical for babies to have them and that often they close up within the first year of life. There is one between the Atria sections of her heart that has up to a 90% probability of closing up and one between her right and left ventricals that has a 75% chance of closing up. Because the report lists this hole as very small and is only asking for a follow-up heart scan in 6 months Kalyssa’s doctor believes there is every chance that it is super tiny and will fall in that 75%. The additional good news is that these holes are not something that will require surgery or even cause Kalyssa a lot of problems if they should not close up. She said that likely Kalyssa would only need to be cautious when surgery, major injuries or dental procedures were performed on her. In other words, she’d be one of those people that would have to take antibiotics to prevent infection if she goes to the dentist or has any surgery. I breathed a sigh of relief when she said that! We are still praying that her holes will heal up, but it is good to know that she won’t have more than a slight murmur and antibiotics to deal with if one or the other doesn’t heal up completely in her first year.

Other good news is that they were switching Kalyssa to all bottle feeds today! That is a huge step to bringing her home one of these days … I was there after her third bottle feeding in a row yesterday and they said she was a little tired for it, but she did manage to take the whole bottle . If she successfully took in a fourth bottle at her 6PM feeding they were going to remove the nasal gavage tube. All of her other wires etc. at this point are just to monitors for heartbeat etc. So … we are getting very close to bringing her home. I’m taking the car seats and car to our car dealer today to make sure we have them installed as well as we can for her journey home. I have an older car that only has one of the car seat safety latches in the middle. I’m hoping the dealership can install one or two more on the sides so that both of my baby girls can be safe in the car.

On the evening of April 2nd Kalyssa weighed in at 4 lbs 9 ozs.

April 2nd April 2, 2008

 

I took a video today and a photo. Wish I could post the video here for you all to see, but it’s not a file type that WordPress allows without paying extra. I did take a photo too though and that is what is above. They have promoted her to now getting two bottle feedings followed by one gavage feeding each day. We’re making progress! Today they had the new thickening additive for her formula and the nurse told me that if she seemed to be struggling with it that she could cut a larger hole in the nipple of the bottle, but that she had done well at her noon feeding. Well, Kalyssa was a hungry girl because she downed the whole bottle without stopping. Usually we have to stop every 10 ccs or so to let out some bubbles (aka burp).

Tomorrow I go for my 6-week follow up with the OB who delivered Kalyssa. Yes – that means she is 6 weeks old tomorrow and still in the hospital. Hopefully she will be out soon. Her weight on the evening of April 1st was 4 lbs 8.7 ozs.

April Fool? April 2, 2008

OK, luckily Kalyssa didn’t play any funny jokes on us today. She seemed really well when I visited. They removed the IV port from her blood transfusion while I was there at 3 PM. Her regular doctor is on Spring break with his family this week and a new doctor is now caring for her. The new doctor does not like to use rice cereal for infants with reflux so a new formula additive has been ordered and she will begin having it at either her 6 PM or 9 PM feeding today. It also looks to me like they have raised the angle of her bed so that her head is even higher above her feet than it was before. I have read that this is a good idea even for adults with reflux (Tad and I keep saying we are going to try doing that to see if it would help him … but haven’t yet.)

Her weight on the evening of 3/31 was 4 lbs 7.8 ozs

Another blood transfusion March 31, 2008

I just got a call from the NICU. They checked her blood count today and it was too low again. They hope to start what will be her second blood transfusion since birth. They thought it would start shortly after her normal 3 PM feeding and end around 6 PM. I’m going to go in around 5 PM so that I can be with her during the last hour or so of the transfusion. I was able to hold her during the end of the last one and I can’t explain it, but it made me feel like I was helping somehow – even if I was just comforting her. And no, I don’t know what this does to the chances she will come home at the end of the week. I knew it depended on how she was doing and we’ll just continue to wait and see.

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Her second transfusion went well. She was very alert during the final hour when I was present.  Actually, she was getting rather impatient that she wasn’t being fed because they were waiting for the transfusion to end around 6:10 to start her gavage feeding.  Once the formula was most of the way in her belly she finally drifted off to sleep.  The nurse said that this time her blood level had not yet caused any symptoms of any kind.  Apparently, they do bloodwork on all the NICU infants every Monday and the level was low so a transfusion was ordered.  She did seem rather alert and her color was good, so she may bounce back from this rather quickly this time.

Additionally, she had her eyes checked today and she passed just fine.  No further eye exams will be ordered prior to her release.  They even gave her a little certificate with a lion on it that said “I was brave!”  How cute :0)

Saturday & Sunday March 31, 2008

I’m having some internet connection issues so I’m posting two days at once while I seem to be connected … Yesterday we happily celebrated Easter a second time with Tad’s side of the family. Because of that, I went to see Kalyssa at her 6 PM feeding instead of the usual 3 PM time. I found out that she had been having difficulty keeping her food down for several feedings in a row so they had done some sort of x-ray/ultrasound and determined that she does indeed have reflux. I guess she’s taking after daddy already because Tad was diagnosed with acid reflux a few years ago. The nurse did say that she may grow out of it, but that is something I will have to ask about with the doctor or whenever she is discharged to come home. They are now giving her reflux medicine 3 times a day as well as adding a percentage of rice cereal to her formula for every feeding to help her keep food down. That was Saturday, and she weighed 4 lbs 5.8 ozs

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Sunday, today, she is doing much better at keeping her food down per the new nurse. I did go in and held her during her 3 PM feeding. They feed her two gavage feedings and then one bottle or ‘nipple’ feeding as they call it. There is nothing new to report other than that she weighed in Saturday night at 4 lbs 6.1 ozs.

Backsliding … March 28, 2008

I was told to expect this, but it is still disheartening to witness. Moving her to the crib has caused her to become sluggish during her feeding times. She now only takes about 15 – 17 ccs of formula from a bottle (and is half asleep during that) and then the rest of the 35 ccs they want her to have is put down the gavage tube in her nose. She was reduced back down to the 22 calorie Neosure formula a couple of days ago, but I’m told it is likely being moved from the isolette and having to warm her own body that is causing the sluggish progress right now. It will pass, and is normal, but she was going so strong on those bottles before that it is hard to watch her with one in her mouth and her acting like she doesn’t even notice its there – much less drink from it.

However, her weight last night was 4 lbs 4.4 ozs – so what energy she has is still going into growing – just at a smaller rate. Everyone asks me when she will go home. The real answer to that is when she is ready. She has to have the body temperature thing and the bottle feedings so regular that we don’t have to worry about her not being on monitors. I’m told it will be before her due date which was May 3rd … but no one can really say what it will be. It is up to Kalyssa and how she progresses.

Her bottle at 3PM today was much better! She took in all 35 oz in the bottle … well, those that didn’t drool down her cheek anyway :0) Lets hope it becomes a trend. I also spoke with the doctor today briefly. There is a good possibility that Kalyssa ‘may’ get to go home sometime next week! Though he was cautious to say that she has to meet certain landmarks before that will happen – caloric intake on her own and all that. It was definitely good news! Those of you who have been reading my blog know that I have been worried that if she was there up to 8 weeks I would have to return to work without having time with her actually at home. It’s looking like I will get at least a little time with her – which I’m sure will give me time to get used to having no sleep again due to her frequent feeding schedule (ha ha), but I’ll relish getting to do that – especially since she’ll be really good at it by then.

Thank you, to everyone for your continued prayers and warm wishes!