Wednesday, February 27, 2008

4 month shots

Sydney received half of her 4 month immunizations today and so far, she's handling it well. I can't believe 2 months have passed since she got the first set! She has more than doubled her weight since then so we don't expect her to be too tired/cranky this time around. She will get the other half next week. The doctor doesn't like to give preemies the whole thing at once since they are so much smaller than your average 4 month old. I was planning to suggest it to her anyway so I'm glad we were on the same page. Ms. Thang let out one scream when she felt the needle and that was it. No tears and no more crying. She got a little fussy on the way home but after getting a dose of Tylenol and having her lunch, she was smiling away until she fell asleep. Thank God.

We also did bloodwork on Monday to check that her anemia of prematurity is going away. Most (if not all) micro preemies suffer from short-term anemia because babies in utero don't really start storing substantial iron until much later in pregnancy. Anyway, her bloodwork came back perfect this time. Woot! The doctor also confirmed that her heart and lungs sounds great.

She now weighs 9lbs 3oz. Yes, that means she gained 14 oz in 5 days, :eek: I'm pretty sure we're not over feeding her and I have actually been erring on the side of feeding her only when she is ready. We're not on much of a schedule anymore (I'm pretty sure the hospital doctors wouldn't want to hear that) but I do make sure she doesn't go too long without eating. The doctor was surprised by the gain but not concerned. I think we may soon stop fortifying her food since she's gaining so fast now.

Have I ever mentioned that God is good? Well, in case I didn't...know that He is.

Tuesday, February 26, 2008

Grandma Pat!


I wish her head wasn't cut off in this one. Daddy is famous for that. :laugh:

Monday, February 25, 2008

We stand in awe

God is so amazing.

We had our appointment with the pulmonologist today and she was soo thrilled by Sydney's progress. She said that as far as 26 weekers' go, Sydney has done better than so many other babies. She said her growth, breathing and general development is off the charts. She was particularly pleasedwith the fact that Sydney endured RSV and still managed to make it home without being on oxygen. She did say that we need to make sure that we keep her reflux under control because the gagging and choking can lead to milk getting into her lungs.

We also talked a lot about making sure that we do all we can to make sure that her lungs mature without her contracting any illnesses. She repeated all the things every other doctor has already said to us:

  • Under no circumstances must Sydney visit any public places, especially during RSV season. This includes church, the mall, the grocery store and pretty much anywhere that does not involve seeing a doctor
  • She CANNOT be around anyone who smokes, even if they are not smoking when they are around her. If the person has smoked during that day at all, it's a no go
  • She cannot go to any daycare, at least not before she is 2 years old.
  • Visitors to our home will be very limited, especially during RSV season
  • Hand sanitizer and hand washing is our friend
  • She absolutely cannot go on any plane anytime soon. I don't think you could find a bigger germ carrier than an aeroplane.
  • If we ever suspect she could be getting sick at all, we need to take her to the doctor. The key is to make sure that she is treated before things get severe. Of course, we're just praying and believing for her health.
With all of that, she said that we never ever have to see her again since Sydney is doing just fine.

Look at the nations and watch— and be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told. - Habakkuk 1:5

Saturday, February 23, 2008

Breaking News!!!

Sydney just rolled over from her tummy to her back, not once but four times in a row!! It may sound insignificant but I know preemie parents can relate. She was not expected to do this for another 5-6 weeks at least but yet here she is. This is because preemies are evaluated based on their adjusted age (based on when they should have been born) and not their actual age. Based on my original due date of Feb 1, Sydney's adjusted age is 3 weeks 1 day. Doctors will track her development based on her adjusted age until she is at least two since that's when most preemies catch up to their peers. A better explanation:

In light of all of that, she is only supposed to the things a one month old would do and not expected to roll over until she is closer to 3 (or 4) months adjusted age. Here's a chart that shows what she should be doing at one month: With the exception of babbling, laughing and sitting up, she's doing everything else on that list right up to the end of 4 months. :cry:

Video! This was the 4th time and she was really angry at this point because I kept turning her over to make her do it again. Clearly I'm more amused and excited than she was. :laugh:

Gran Gran!

These are for you!

Friday, February 22, 2008

Who needs a schedule to gain weight and grow?

Sydney weighs 8lbs 5oz today and she is 19.5 inches long! She has gained one ounce per day since she saw the pediatrician last week. She eats great during the day but she prefers to sleep for longer stretches at night and so far it's working just fine. I was a bit concerned about messing with the schedule and we tried to make sure her calories stayed where they needed to be but I was still a bit apprehensive about today's weigh in. The doctor was also VERY impressed that she is trying to roll over based on her gestational age. I don't think she plans to let a "little" extreme prematurity slow her down.

We're also doing MUCH better with the reflux. I am so, so grateful that we have it under control because she was sooo miserable. She's happier, she sleeps better, she eats better. She's even tolerating being in her swing more or playing on her mat on the floor. She was in so much discomfort before that she wanted to be held all the time and only in an upright position. Now we can cradle her and she can actually see the face of the person holding her.

The best thing is watching the love affair between her and her Daddy. She loves me and she loooves to snuggle with her Grandy but man, oh man, she adores her Daddy - and the feeling is mutual. When he takes her when he gets home, she just gazes and gazes at him and smiles the whole time. Many kisses are exchanged and they just have a good time together. She's definitely a Daddy's girl.

On Monday we go see the Pulmonologist to check her lungs and her breathing since being off oxygen and since having RSV. She's quite a busy girl!

Wednesday, February 20, 2008

Sayonara ROP!!!

Baby girl's eyes are mature now and there is no more trace of ROP! Woot! We don't have to see the eye doctor for another 6 months unless we see something that concerns us. Since she may have some slight decreased vision in her right eye, she has the tendency to not use it as much. When she awakens she will open the left eye first and then open the right eye after another minute. She does the same thing when she's sleepy too. The doctor says it's very, very common for infants to stop using an eye that they don't see perfectly from even if the difference in both eyes is very small.

Miss Thang will have to wear an eye patch over her left eye for 1 hour per day to train her to use the right eye. As simple as it is, it's a very effective treatment for "lazy eye." Don't worry, there will be pictures. :laugh:

All in all, we're VERY happy about today's visit!

Auntie Tricia!!! Auntie Tasha!!!

This outfit and her going home outfit was brought to you by Auntie Lizz. Sunglasses by Auntie Sonny. She has the bestest aunties.

Tuesday, February 19, 2008

One week at home

and two weeks off oxygen! Isn't that fantastic?!?!

Sydney is doing great at home. We're still battling reflux so we have been taking shifts just holding her upright virtually all day long and she loooves that. As of the time of this post, it had been about 2 hours since she ate and she was sleeping. I put her down and she opened her eyes soo bright as if she was wide awake the whole time. Then came the fussing and Grandy came and rescued her. She's happy as a clam now. If we lay her down too soon she spits up or chokes. 85% of preemies have reflux so this is very common. Since it became so severe, she was put on her reflux medicine and we should be seeing some improvement very soon.

She's also no longer interested in the schedule she had at the hospital where she was fed every 3 hours without fail. When I wake her at night, she is just not interested in eating at all. I have increased her calories during the day, hoping to keep her weight up. We will see how that's working when we go back to the pediatrician on Friday.

Tomorrow we have another appt with the eye doctor just to confirm that the ROP is history. I am not looking forward to watching them dilate her eyes and do that test. I specifically chose to not be present when they were being done when she was in the hospital. Now not only do I have to be there but I have to participate and restrain her. Not looking forward to it at all.

Tummy Time! Daddy HATES these pants! :lol: They're not my favourite but they match!

Saturday, February 16, 2008

Thursday, February 14, 2008

Happiness Is...

Don't make this face fool you. She loves the water.

She LOVES this swing.
This outfit is a gift from Auntie Sonny. Isn't it adorable? :love:
I promise we're not pinching her!
Sleeping on her reflux wedge. It's much more comfortable than it looks.

We had our first appointment at the pediatrician today too. The doctor was happy with how she looked considering how much time she spent in the hospital. We're doing great at home and I think she's totally used to her new surroundings now. We're having the best time with her.

Tuesday, February 12, 2008

Discharge Day!!

Angie - the most awesome nurse ever. She is the one who calls and checks on her babies on her day off. She is the one who backed me up when another nurse had trouble feeding Sydney and the doctors started doubting how well she was doing. She's really great at her job.

Dr. Ann - one of the best neonatologists in the country. I'm not just saying that. It's a fact.

In the car!!


Uh Oh

B took a pic of Sydney and me but my head is cut off and she's screaming and it's blurry. There WILL be one tomorrow. :smile:

So you want an idea of what happened today, huh?

Watch this and use your imagination. Pretend the cashier is the discharge nurse, the customer is me, the packages are Sydney, and the man in the car is B.

Yep, we busted outta there so fast and gave nobody an opportunity to suggest that they made a mistake.

Pictures to come





Monday, February 11, 2008

Sydney is fine

I'm sorry I didn't update sooner but I've pretty much been on the phone all day. There was a mix up with some hospital records but we have it all straightened out now. It's looking like we're on for tomorrow morning.

I'll keep you posted.

Sunday, February 10, 2008

No, Sydney is NOT home

It's also unlikely that she will be home tomorrow. It's not anything that happened while we were there this weekend but I'd like to speak with the doctor tomorrow before I get into the whole long story. Besides, I've had 2.5 hours sleep in the past 48 hours (babies are hard work) so I don't think I could make a long post even if I wanted to.

Saturday, February 9, 2008

Friday, February 8, 2008

Forgot to mention this...

Sydney has her car seat test this evening as well. Many preemies have poor head control and in big seats they get poor support and their heads slump, flop forward or sideways. One out of five preemies have oxygen desaturation, apnea and bradycardia while in their car seats. She will need to sit in her seat for at least an hour without problems. We purchased a car seat that is highly recommended for preemies and has good support, so we're expecting her to pass with flying colours. Thanks for the car seat Uncle Dennis and Mom!

Grandy's back!

We're soooo close!

Sydney had a wonderful night!! She's taken every last drop of her feedings from every bottle for the past two shifts. I'm so happy that we had the time to develop great relationships with a lot of the nurses who know Sydney best. The nurse that had her earlier in the day promised me that she would get Sydney assigned to a night nurse who knows her and would take the time to feed her properly. It's not as if she takes an hour to eat...she finishes her bottle in 10 minutes just like all the other babies. She just needs that burp because of the reflux.

She had her Jamaican nurse last night and she spent a lot of time caring for baby girl when she was still in intensive care. I fed her and she did great. One burp in between and a slow flow nipple and we were done in record time. She didn't have any dips in her oxygen saturation and she breathes just fine. She's back with Nurse Angie today (same one who had her yesterday) and we're happy about that. Angie is the kind of nurse who calls and checks on her babies on her days off. She's wonderful.

Miss Thang weighs 7lbs 3oz today!

Thursday, February 7, 2008

Jesus Take The Wheel

First, the great news:

Sydney's ROP is regressing!!! Hallelujah!!!!! Her eyes are maturing and it's clearing up on it's own. I cannot tell you how excited we are are!

The "something to pray about" news:

Sydney's day nurse had some problems feeding her today. The nurse on shift is convinced that the nurse obviously does not understand my baby girl and how she eats. She eats great if you know how to feed her. She MUST be burped halfway through her bottle or she gets umcomfortable. Once she is burped she takes the rest. She does for me and the nurses who have cared for her the most. Feeding issues are the number one reasons for well babies to linger in the NICUs around the country and obviously doctors want to play it safe. I just don't want them to not work with her and she stays there even one day longer then she needs to.

So, I called the doc and let her know that I don't want her coming home if she is not well enough to do so but I also want to make sure that their concerns are valid. She said she agreed with me and made a deal with me. We will room in on Friday AND Saturday night and I get to do all her feeds. If she eats all 16 bottles for me, then she leaves without delay. If she doesn't, she stays. I can live with that.

Your mission (should you choose to accept it), is to pray super, super hard that we have no issues and my big girl does great this weekend.

Did I already mention that the ROP is going away?? Woot!

15 Weeks!

Sydney is doing fine this morning. Breathing and eating great. I love days like this when I hardly have anything to say. :D

She's cute huh? Go ahead. Admit it.

In her little newborn onesie. She has her feeding tube taped to her face just in case she needs it if she poops out during a bottle feeding. She does get very tired as the days end but she hasn't given up. They don't want to wrangle with her with her tummy half full trying to re-attach it. So far, she hasn't needed it.

Wednesday, February 6, 2008

Day 104!

Sydney is eating and breathing like a pro! She's doing great without oxygen and we are still free of all tubes.

She weighs 7lbs 1.75oz and that's a bit less than yesterday but perfectly acceptable. She's burning a ton of calories now that she's breathing without support and not using her feeding tube.

Please continue to pray that everything goes great over the next 5 days.

Tuesday, February 5, 2008


We are off oxygen!!!!!

Did you hear what I just wrote???


Sydney was removed from the cannula at 11:00 a.m. and she's doing great! They turned off the flow and left the prongs in her nose for 3 hours so as not to scare her. The prongs have now been removed and she's handling it like a champ. All her stats are perfect and she's doing great with her feedings.

We are set to room-in on Friday night and the official date for discharge is Sunday.


Look at her face! No tape! :cry:

Are you ready for this?!?!

A certain big girl has not used her feeding tube in over 24 hours!!! I wish I could adequately describe how much better she is doing with feeding this week. She's so much more coordinated and her breathing is perfect. There's a theory that all the sedation last week gave her some much needed rest and allowed her lungs to FINALLY recover from RSV. My friend Amy told me that RSV can be frustrating and wow, she wasn't kidding.

The other great thing is that we are back to 12.5 ccs of flow for oxygen and that's where she needs to be weaned completely. We're thinking the docs will give her a trial run by tomorrow.

Weight is 7lbs 2.25 oz today!

Monday, February 4, 2008

Day 102

Sydney is doing great! They have started doing all her final testing to prepare her for discharge and so far, so good. Her EKG this morning showed no problems and the cardiologist gave her a clean bill of health. We're at about 22 ccs of flow for oxygen, so it's getting closer to where we were last week.

The doctors also instructed that she be fed 2 bottles in a row and then every third one by tube, just to pace her and not stress her too much. They did say though, that if she was awake and alert, we should try the bottle at the third feeling and see how she does. So far, she wakes up before every feeding and is taking all bottles! We have not had to use the tube at all today. She's now also up to 60ccs per feed - two full ounces!

Her weight is the same as it was yesterday and for once everyone is happy about that because of the huge gains the past few days.

The doctor said we should be prepared to take her home this weekend...

Sunday, February 3, 2008

Day 101

Little Miss is doing so well! She's been taking her bottles like a champ, with no problems at all. She still has reflux but she's nowhere near as uncomfortable as she was even a week ago.

She weighs 7lbs today!!! That means a 6oz gain in two days and of course that caused some concern. They did a chest X-ray to ensure that she wasn't retaining any fluid and she's just fine. She also wasn't acting like a baby does when there's some retention going on and she's soaking her diapers between feedings. It's most likely due to the fact that she went from 49ccs to 58ccs in a few days and she was very inactive between Tuesday and Saturday morning. Now that she's doing bottles again and she's more awake and active, we should see smaller gains. They will keep an eye on her anyway.

Saturday, February 2, 2008

We love good days!

Today was one of them...but it didn't start out that way. Last night they told us that Sydney's most recent lab tests suggested that she may have a bacterial infection but it was inconclusive. They ordered another one and expected to get the results this morning. They were also concerned that her blood cell count was low (suggesting infection) and that she wasn't tolerating being at a lower rate for oxygen since being sedated on Wednesday. If her cell count didn't improve then we were looking at a blood transfusion.

When I called at noon, the cell count was even worse and she was on the same rate for oxygen. She also wasn't tolerating any bottle feeds at all. A blood transfusion was ordered. I was of the opinion that she was still under the influence of the mega dose of sedatives and just needed some more time. Of course the doctors want to err on the side of caution so they are not big on the "wait and see approach" for most things.

Anyway, I don't think I've prayed sooo hard in my life. We just don't want her to be sick again not only because it makes her miserable but also because one illness adds an average of 3 weeks to a preemie's stay in the hospital. 2 weeks of antibiotics and then another week or so of observation.

Before we left home we were advised that the second test for infection came back negative. Woot! By the time we got there, she was wide awake and switched from the high flow cannula to the lower flow at a rate of 175ccs. By the time B changed her and got her out to try a feeding, she was down to 100ccs. 10 minutes later, her sats were so high, we turned her down to 75ccs. At that point, the lead doctor came to chat with us and talked about the upcoming transfusion. Then she said, "The fact that she's not tolerating being weaned suggested that she may need a little help." Then she looked up at the oxygen setting and was SHOCKED! She said, "Wait! When did this happen! I was just in here!" I told her that she was just improving dramatically before our eyes. She said, "Wow! I'm putting a hold on the transfusion. This is amazing."

Then I started feeding her (she's been increased to 58ccs per meal) and our girl gulped that thing down in the fastest time she ever has and she never took one break. Typically, we have to give her 2-3 breaks because her breathing would get fast and she would struggle. She also would have trouble keeping her oxygen saturation high. It wasn't awful but it wasn't as perfect as it was when she wasn't eating. Today, she didn't de-sat ONCE. It's the best bottle feeding she has ever done. She's also now down to 50ccs of flow on the cannula.

Thank You God.

Friday, February 1, 2008


I was just catching up on Nate's blog and he posted a few things about himself. I can relate to every one of the 6 things he posted. Well except for spouse isn't in the hospital but everything else in that paragraph is true.

My friend Lisa said something once that I will never forget. She said, "Whatever it's never just you." No matter what we go through in life, it's never just us. Someone else has felt the same way and experienced and struggled with the same things. Bet yah didn't know you were that profound, huh Lisa?

Anyway, here's the post I'm talking about:

Due Date!!!!!

Woot! We made it!!! My baby made it to her due date! How awesome is that??!?! We are so thankful for her. If someone told me 4 weeks ago that she would still be in the hospital on her due date, I probably would have smacked them. :laugh: God knows what he's doing though. 4 weeks ago she was just coming down with RSV so obviously she needed to be there. God knows why she had to get RSV in the first place and we're not questioning it. She was in the best place to be treated for it. There are no more invasive tests in her immediate future and her follow-up stuff will be done after she has been discharged from the hospital. We've made it 99 days with no surgeries and no life threatening complications. Having seen so many other preemies suffer far more than she has, we are nothing but grateful and humbled.

She's a bit more alert this morning and her breathing is much more stable. It's funny though...the sedatives make her soo happy. Even when she's de-sating (low oxygen saturation) she's smiling. Everyone is running around trying to get her stable and she's grinning like it's no big deal. The nurses joke that she's still feeling the effects of her "happy juice." This is why you should say no to drugs, kids. Your heart rate is dropping and you're struggling to breathe but you don't even know it's going on.

She weighs 6lbs 10.25oz this morning! That's 10.25 oz this week alone! I suspect that has a lot to do with being tube fed a lot this week because of the sedatives and the fact that she's barely moved much in two days. Still, 10oz is awesome!