Home Sweet Home

We all slept under the same roof for the first time last night (monday) and boy was it a long time coming! 67 days we have been separated. In some ways it seems like it's been a lifetime and in others it seems like only yesterday that we were all swept onto this ride. I remember my first time seeing Veda in the hospital. My visit was a short one because all I could do was cry. It was the hardest thing I had ever experienced, seeing my little girl like that. I was so scared for her, and at that moment I felt utterly helpless to her. I'm so glad that I was able to return to the hospital that next day ready to stay by her side as she had the fight for her life ahead. Don't get me wrong, there were many times that I wanted to go bury my head in the sand until this whole thing was over. Not knowing up front what the ramifications of her early delivery would have, we were on the edge. We realize just how fortunate we are to have our strong willed little girl healthy and happy at home.

Back to our first night... long first night. Yes, I felt an urge to keep one eye open at all times to monitor her breathing. As it turned out, there was no need. She let me know all night long that she was doing fine. Veda loves to make all kinds of little noises while she sleeps. She even wiggled her way out of three diapers and poopied three sets of jammies. Until she's able to pack a little junk in that trunk, we'll need to stick with a onesie to hold those diapers in place at night.

The doctor warned us that Veda may experience a little lag in her feeding due to being in a new environment. She disagrees with the doctor. Veda's been eating more than ever. She's eating every 3-4 hours and taking about 2.5 ounces a time, which exceeds her hospital intake.

Veda will miss all the great nurses and doctors at the NICU. She'll now be moving on to her new entourage of care - so far I have the Pediatrician tomorrow, the mother baby appt next week, the physical therapist later this month and a phone consult with a nutritionist in a couple of weeks. We're going to be busy!!!

What a week...

Veda's ready for the challenge...

Watching the monitors...

Well done!!!

Week in rewind:

It's been a crazy week for Veda. She had her immunizations on Monday and Tuesday. By Tuesday afternoon she was not herself and we could tell she wasn't feeling so hot. I called around 10 pm to check in on her. The nurse told me that Veda had a terrible spell right after we left that night. Apparently she was lying quietly in her crib when her heart rate alarm started going off. Her heart rate went pretty low before the nurse decided to intervene (they like to first make sure they can't pull themselves out of it). It was during shift change so our day nurse and night nurse were in there together trying to stimulate her back. That wasn't working so they had to bring out the oxygen mask. She has never had a spell so bad that the oxygen mask had to be pulled out, so hearing this on the phone had Andy and I really concerned. The nurse told us not to worry and it seemed that she was doing much much better. She had even just finished a huge bottle with no problems. Needless to say, we were very anxious to get back to the hospital that next morning to see for ourselves that Veda was well. To our relief Veda was like a new baby, she was great! I could tell she was feeling so much better.

When I talked to the doctor that next morning I asked him if he felt that this spell was a reaction to the immunizations. He said one can only speculate. What ever the cause, the spell bought her another 5-7 days in the NICU - not what I wanted to hear! Although, it's the random heart rate drops while she's in her crib that really scare me when thinking about bringing her home. I chose not to argue when the doctor ordered us another week.

Veda had her eye exam on Thursday and the report was music to my ears... no follow up needed for two years!!! This means her eyes have been maturing as they should. Yeah!

Lastly, she had her car seat challenge on Saturday. Yep, they finally had us bring in that dusty old car seat. That was the longest hour ever, our eyes were glued to the monitors.

That was the final hurdle, so we now are at the mercy of the 5-7 day waiting period. The doctor's final word was to have her discharged TOMORROW!!!! I can't believe it's finally here!

I'm sure it's going to be a pretty stressful couple of days or weeks. What ever will I do without those monitors telling me how she's doing! Wish us luck!

She'll be home soon - I mean it this time!

We have a very busy week ahead of us. Veda just needs to stick to what she's been doing and she'll be home by the end of the week.


Getting all her feedings from the bottle - CHECK


No more heart rate drops - CHECK (last one documented is from the 9th)


6lbs 5oz - CHECK


No more heart murmur - CHECK! (she had her final ecco today and it verified that the murmur is gone! What a huge relief!)


She had her first immunization today and will have the final one tomorrow. It's hard to believe that they give these while they're still so small and vulnerable, but I guess it's all about the age, and she is 2 months old! To be honest, I'm relieved that she's still under the care of the hospital for these shots as it can sometimes cause a set back. This way she'll be well monitored.


She has her final eye exam on Thursday. This will result in a follow up appointment a couple of weeks down the road, or an appointment 1-2 years from now. It will all depend on how mature the vessels appear in her eyes.


I'm currently driving around with an empty car seat, I just need a baby to go in it. I may look crazy, but at least I have it accessible for when they ask for it. Her final test is going to be the car seat test, which will require her to sit in it for an hour while being monitored. They want to make sure her saturation rates don't drop while in it. Hurry up and ask for it already!


It's so weird being in this place right now. All of the nurses kept telling me that when Veda was ready it would start to happen fast, and I feel like that's exactly what's happening. For me to see the end of this very long and scary journey is surreal. It just always seemed so out of reach, but it's not, it's here. This will be the beginning to a new kind of worry, for what would I be without worry?

I think Veda likes this new skill of eating

Feed Me!

Juicy burps for daddy

look at that hungry appetite!

I think we've found our answer!

I was able to find the special preemie nipples for the Dr. Brown's bottles and they have been working perfectly! She's not loosing any out of the sides of her mouth and it seems like a much more pleasant experience for her. We were able to use them all day yesterday and I just heard that her evening with them went really well too! Molly, I owe you huge!

She's up to 6 lbs 4 oz! We'll get the car seat dusted of because I know they'll be asking us to bring it in soon!

You can read her like a book!

Hungry!

Sleepy

Good morning!

Grumpy

She's moving forward

The last few days have been all about getting Veda to consistently take her feedings. Two days ago she seemed to have turned a corner. She's hungry for those bottles! It's still quite a workout for her to get through a whole one, but she's doing it. Yesterday we had the feeding tube out and she was bottle fed all day. Last night all of her feedings were with the bottle except one tube feed (she's fed every 3 hours).



We are experimenting with different bottles to see what's going to be the best fit for her. Upon my good friend Molly's recommendation we tried the Dr. Brown's bottle a couple of days ago, and that was the easiest bottle feed I had ever done with her. Previously she would create a vacuum effect from her strong sucking power, and not enough air was making it's way in causing the milk not to flow. The Dr. Brown's bottle has it's own venting system that helps eliminate this. I fed her in 15 minutes with this bottle, including a burp session. It comes out a little too quickly though, and it can be a bit sloppy. They do have a preemie size nipple out there that I'm going to pick up today to try. The night nurse tried her on one of the hospitals standard bottles, to see how she would do now that it appeared she had the hang of it. She said that Veda did seem to loose less milk through the sides of her mouth and she was able to take the whole thing. The jury is still out on which one is going to be best for her right now. But once she's a little bigger and stronger the Dr. Brown's will be a no brainer for us. Thanks Molly!


I brought in a new musical toy for Veda to enjoy during her awake times. She's been waking up about a half hour before each of her feedings, and is very wide eyed and bushy tailed. I thought it would be a good time for her to enjoy the sweet sounds of Beethoven as she prepairs for her meal. It's nice to be able to drown out the white noise of the NICU as well.

Veda is up to 6lbs 2oz. She lost almost an ounce from yesterday. I think it was due to the amount of milk she was loosing through the sides of her mouth. We're going to weigh the wash cloth that I use around her mouth before and after her next few feedings to see how much she is missing out on. The scales we use are down to the gram so they're very accurate. From the looks of her wash cloths yesterday I wouldn't be surprised if they all totaled a full feeding lost.




We're not there yet, but we're close, so close I can taste it. As the doctor would say, about a week (he's been saying this for the past 3 weeks now!). I think he likes to keep us excited :)

Veda keeps things interesting

I just got off the phone with the doctor, he said Veda looked really good during his visit with her this morning. He mentioned that she appeared to be more comfortable and he sensed a positive change about her. I told him not to toy with me - but I believe this could be her week to show us what she's capable of!

To recap Veda's feeding consultation... The PT thought that her issues were a combination of some reflux, slight lack of stamina and immaturity. The immaturity is based on where most 36 weekers are at in their progress. It was determined that she was acting a week or two younger than what she is. Although that's not the easiest thing to hear it's comforting to know that she will catch up. The doctor started her on some reflux medication, we're giving it a test run just to see what happens. He doesn't think the murmur is playing a big role in all this so that's good to hear.

I asked the doctor how he felt about Veda and how she's doing overall. He gave me some great reassurance by reminding me of all the positive things about her progression. She never had to be put on a ventilator, she was on very limited oxygen only for a few days, she doesn't have eye disease, she had no brain bleeds, all of which are real concerns of a 28 weeker. So she's lagging a bit with this last obstacle of concurring her feedings - this I can handle.

I'm off to visit my little peanut now!

Oh ya, she's up to 5lbs 12 oz!

7 weeks and a small step back

I was so sure that Veda would be coming home next week, but it's starting to look unlikely. We've seemed to have hit a wall with Veda's progress. Her feedings were right on track a few days ago, as she was finishing a few bottles a day. Unfortunately the last couple of days she's moved backwards. At the most she's taking only half her bottle feedings and she seems very irritated when doing it. To me she seems to be very uncomfortable, which suggest bouts with some heavy duty reflux. She squirms and turns red in the face, and grunts (and no, I don't think it has anything to do with her being gassy or pooping) then she wants nothing to do with the food. She has been having a lot more spells (when her heart rate drops) in conjunction to her feedings as well. It's so hard for me to see her so miserable, I just feel helpless.

The doctor has scheduled her to have a feeding consultation with the physical therapist tomorrow. He wants to assess her stamina. He's worried that if it's a stamina issue then it could be her heart murmur causing her problems. I think if I had a choice it would definitely be a reflux issue. I just hope there's an easy resolution so that we can get her back on track.

She's at 5lbs 7 ounces. She had a couple of days of weight loss in there, so it's been a slow climb this week. She is starting to fill out those preemie clothes though! Don't you just want to kiss those cheeks?

May my next post bring a little more positive news!

No more oxygen monitoring

While we were visiting today the doctor said he wanted to remove the oxygen monitor from her foot. This is great progress although I'm a bit apprehensive about the whole thing. These are the numbers that often give us dipping trouble. When a dip is happening my eyes are glued to the monitor waiting for her to come out of it. It's always followed by a visit from a nurse checking on Veda, which is when they have to remind me every single time to look at my baby and not the monitor. By looking at Veda I should be able to tell if she's okay by her color and breathing. They probably got tired of telling me to stop looking at it so they decided to take it away all together. What ever helps get me ready I suppose! I'm probably more work for them then Veda is!

She took 2 full bottles last night and almost a full bottle for me today. She just gets so tuckered out, but she's almost there. She's up to 5lbs 5 ounces!!

6 weeks, 5 pounds and mommy's back!

I was out a total of 5 days, finally heading back to the hospital on Wednesday. That was the quickest I've ever bounced back from a cold. It seems the carrot juice, honey and steam really did the trick! I feel like a million bucks! Deep down I was hoping by the time I made it back to the hospital Veda would be sitting up and saying mama, and ready to come home. But it's business as usual. She is doing great though! She's up to 5lbs 2 ounces, which seemed so far out of reach only a few weeks ago. So far she's only been able to get down one full bottle, the rest have been partials with the remainder going through her feeding tube. Her breathing issues are usually during her feedings, leaving the rest of the day pretty quite. I think she'll get it any day now. Yesterday was her 6 week birthday!

Our friend Winde sent us some great head wear. She's sporting one of her new headbands in the pictures above.

Open Crib and bottle feeding!

Veda has been moved to an open crib since Thursday. As long as she keeps up her body temp. she can stay there, and so far so good. I just spoke with the doctor this morning and she has taken 2 full bottle feedings in the last 24 hours which is fantastic at her age! He also mentioned that her acid reflux is getting better as well.

I haven't been able to go up to the hospital since Thursday because I've been sick, and it's very depressing. I've been trying every home remedy to hurry this illness along so that I can get back up there but it's probably going to be another few days - UGH! So I wasn't there when the physical therapist looked Veda over, but was told everything looked good. The only thing noted was the shape of her head. I guess the sides of her head are slightly flat due to the way she's positioned. Preemies are often left on their sides and stomach which causes this problem. They'll teach us how to prepare a halo for her head while she sleeps, when she comes home. How appropriate for our little angel, ahhh.

Her heart murmur is still audible which leads them to believe it may not close. They will do a final ecco on her heart at the time of discharge to take a look at it. If it remains open we'll need to do follow up treatment when we are home. If it remains asymptomatic, which it has so far, it could be possible to avoid surgery and opt for a less stressful procedure that is offered to babies weighing at least 10lbs. Speaking of 10 lbs, our little growing Veda is now a whopping 4 lbs 12 oz!!! She has come so far!

I think that Andy has been secretly enjoying his alone time with Veda. I heard him call the nurse yesterday to tell her he wanted to give Veda a bath during his visit. When he had the nurse on the phone he referred to himself as "hi, this is Veda's daddy", I just thought it was so cute! I'm not sure if it was the use of daddy or the sweet little voice he was using, but it was pretty cute. He's been bottle feeding her and getting lots of pictures, although I've yet to see them because the camera has been at the hospital!

Hopefully I'll be back up there soon!!

Veda is over 4lbs!

Veda now weighs an impressive 4lbs 4 ounces! It may be coming on a little too quickly now and it's showing in her little hands and feet, as they're a bit puffy. The doctor is going to hold off on increasing her food intake for now. He doesn't hear any liquid in her lungs and so it appears to just be a little water retention. She had a little sodium added to her diet when she was experiencing the weight loss, so this could be a little side effect to that.

I'll be spending more time at the hospital so that I can help Veda with her bottle feedings. They want to get her moving in that direction and it looks like she just may be up for it. The quicker she can get the hang of it the quicker we'll be able to get her home. She'll be 34 weeks on Friday and they say between 34 and 35 weeks preemies really start showing great strength. It's been pretty incredible so far seeing what can happen in a weeks time. Within the next two weeks we want her to master her feedings, be able to hold her temperature in an open crib and be over 5 lbs (the weight milestone is for me - it has nothing to do with her being discharged).

We'll be meeting with a physical therapist on Friday to check her motor skills. I'll be sure to post how that one goes!

Veda's little bath time...

more pictures

Thanks for the new hat Gina!!!

This is currently where Veda calls home. The monitor in the left corner is what keeps me on pins and needles.

Happy 4 week birthday Veda (tomorrow)

I'd like to first say thank you to my work - Rose City Mortgage, for the great baby mama party! Also, thank you to Meggan and Molly and everyone who came to the bash last weekend. It was so much fun and so great to see everyone. Veda's a lucky girl to have so many wonderful people in her life (I'm pretty lucky too!!!)


I have some interesting news to report regarding Veda's weight. It turns out that she gained a ton of weight literally overnight. I went in on Tuesday to find out that she was up to 3lbs 13 ounces! This is a huge weight gain and it left me a little suspicious, so I had them weigh her again while I was there. The weight was confirmed with the second weigh in so I requested one final test, I had them weigh something on another scale and then on our scale to make sure it was working correctly. It turns out that she has in fact gained that much weight! I expected some sort of loss today, but she is currently maintaining the 3lb 13 ounces, so hopefully her yo-yo dieting is a thing of the past!


We attempted her first massage Monday night (maybe that helped with the weight gain - who knows!), it went pretty well, although she began to get a little pooped out half way through it so we'll have to try again later.

Either I would forget my camera, or I'd remember my camera but forget the battery the last few visits, very frustrating!! Finally, I've got my act together and have some new photos...











Looks like those added ounces are giving her quite the potbelly :)

Go Veda Go!

The past few days have been great - I hope this will be the new trend! Veda is back up in her weight. She weighed in last night at 3lbs 4 ounces, what a relief. Looks like going back on the cannula was a good thing. She was probably wearing herself out trying to keep up her breathing. Now she can relax a bit and let the pounds come on. They'll give the removal another try once she's beefed up a bit.

We've been up to all kinds of stuff these past few days. I gave Veda her first bath and she loved it! Well, she loved the hair washing part at least. When I was done scrubbing her down in the little bath tub, I swaddled her up and put her head under the sink faucet and washed away. She was all bright eyed and happy. Andy and I are scheduled to do another one on Sunday, with the two of us there we should be able to snap some pictures.

We also took an infant massage class this week. This is going to be alot of fun to do with her. And it sounds like there are so many benefits to this. We'll start these on Veda Monday!

Roller Coaster part 2

I thought I should post the good news I got from the doctor this morning. Veda is back to packing it on. She has come off her losing streak and put back on an ounce. Thank goodness!

Keep up the prayers - I know they're working. Maybe throw one in for her mommy too!

I'll get some new pictures tonight when I go up for my visit.

The Roller Coaster...

I'll be honest, the last few visits have not been easy. My anxiety level has been through the roof! Veda's been having a hard time keeping her oxygen levels up and I've actually had to watch her turn blue a few times. I came in this morning to find that she was put back on the cannula which is giving her air flow again. I hate to see her back on it, but I hate even more to see her struggle to get a good breath. And unfortunately there's more, she's also lost a couple of ounces and is now back down to 3lbs. They've increased her food intake, and the doctor doesn't seem too fazed by the loss, so I'll try not to focus on it either.

I've been told over and over that this is all typical stuff for a premature baby. She still has alot of developing to do. I'd just like to push the fast forward button.

May Veda grow to be big and strong like the Fasulo brothers, who also entered this world at the 2lb range! She can do it!

xoxo,
jamie

Another tube GONE!

I came in yesterday to find Veda's pic line and IV removed! This means she is 100% on milk - plus a little fortifier to add calories. I'm so glad to see this one gone as the pic line seemed very invasive. The only tube left is her feeding tube and this typically doesn't come out until she's ready to come home.

She is up to 3lbs 3ounces so she's moving right along.

BTW - she is yawning in the picture above not crying :)

3 lbs !!!!!!

Yes, that's right, Veda officially hit the 3lb mark last night. She's on the upward climb. You'll also notice that she is still without the cannula and it appears that she will not be going back on it. They've moved her feeding tube to her nose so her mouth is now free to try bottle and breast feeding. Veda is back in the full isolette but I'm told this is a sign of progress. They put babies in the isolettes when they no longer need so much hands on care. These are good for them because it helps keep out the noise and is easier to control the temperature.

I put some pictures in her little space so she wouldn't forget about us in between visits - and so she could get to know byrd before she comes home.

April 26th

We came in this morning to find that the evening nurse had put this pretty bow in Veda's hair. So I had to add the outfit!

They are trying her out without the cannula (the air flow in the nose). She had a couple of spells while we were there so she may have to go back on it. We'll find out tomorrow at our visit.

She's up to 11 mls of milk every two hours. Once she's up to 21 mls she'll be able to come off her IV completely. At this rate she should be there in no time.

more kangaroo care

I brought in my robe and moved in for the day. We napped for hours!