Just Some Pics

ok so its not easy to get pics where they both cooperate, but oh well

Dress Up Time With Grandma

My mom loves to use Kate as her little doll to dress and play with.  Today was no different.  Here are a few pics from today.

doesn't she look so smart!

Kate changed her name to Josephina because she said now she looks more like her boyfriend Joseph.

Kylee still continues to well.  She has gained a pound since surgery.  The cardiologist was so impressed with her last echo.  He said her function looks great and she has a little bit of constriction in her pulmonary but more likely she won't need any more surgeries.  Her oxygen saturations are still at 100%!  I'm so amazed at how well she is.  Her only complaints right now seem to be teething and digestive issues from her iron. 

On Tuesday we will be celebrating Kate turning 5!  How time flies.  She is super excited and anxiously awaiting Uncle Mike, Aunt Nicole and cousin Austen's arrival for her birthday party.

Cardiology Visit

Today was Kylee's 1 week checkup with the cardiologist and it was rather boring, which is good.  Everything checked out fine and we don't have to go back until 3 months unless there is an issue.  Overall she is doing well.  She still seems to be bothered by teething and doesnt really like when she has the hiccups and her sleeping at night is a little off.  Other than that, she is just a happy baby. 

Kate had her first heartbreak the other day.  We went to the park with her "boyfriend" Joseph and they had a little issue which ended up with Joseph not wanting to hug Kate or hold her hand, which made Kate hysterical.  Although she was upset it was a little humorous.  Joseph did end up doing both not willingly though and Kate cried the whole way home saying, "Joseph didn't want to hold my hand!"  He ended up calling her later and said he was sorry and he just needed a nap.  Those two are so cute!

Kate being crazy as usual

Happy 7 Months

My baby is 7 months old today!  She has endured so much in these last few days and yet she is still my smiley happy baby.  So far she has done well, she slept great last night probably trying to catch up on sleep after a few interrupted nights at the hospital.  The only thing that seems to bother her is her gums from teething.

5 days post op( this is more just for me to look back on)

All I Can Say Is Wow

Well, we shall be leaving after they get all her discharge papers and instructions together.  It is truly amazing to think only 4 days ago she had her surgery.  Yeah!

New Room

Well, I've gotten my snuggle on for quite awhile today.  In fact, Kylee didn't like for me to put her down, which is ok.  We moved to the step down room about 4, a little later because they were waiting for a room.  I am really amazed how fast she and some of the other heart kids I've seen progress.  Right now they are weaning her off of her o2.  She is on 0.3 liters and she is her sats are at 100%.  She is only taking lasix, which helps get rid of some excess fluid and tylenol as needed, which she just had because she seemed like her gums were bothering her.  Her congestion in her upper airways has gotten better after they gave her a good suction earlier.  I know she can still have setbacks, but still it is amazing how much she has progressed in 2 days after having major open heart surgery.

Thank you lots for all the prayers and thoughts.  It really means alot to us to have people we don't even know very well(as well as ones we do) send their well wishes.

Possible Step Down Room This Afternoon

Kylee is still doing pretty well.  They are probably going to send her to a step down room this afternoon if they have a room available.  She is getting her all her ivs out, except for the one in her hand.  They took her off of her bp medicine this morning.  She hasn't really been overly irritated today, she just gets upset it seems when she sees me and realizes I can't pick her up.  She also has gotten to eat and got pretty upset apparently when they stopped feeding her.  At first they can only give her a little to make sure she can tolerate it.  But she had about 3.5 oz at her last feed.  My little chunky monkey.  We have had a couple scares since yesterday with her o2 sats dropping, but fortunately both times the o2 hose had popped off the wall.  This am she is only on 1/2 a liter of o2.  For awhile there with the o2 being off she did do pretty well.  So although I am excited that she is doing so well, I'm also nervous because more of the care will rely on us.  But this means I will get to hold my baby!  Yeah! 

Please continue to keep her in your thoughts and prayers that she continues to recover well!
Thanks

Pics From Today

So Kylee looks alot different today, so I thought I would post a couple pics

So Far So Good

Despite being irritated, Kylee has been doing well.  They extubated her today.(took her breathing tube out), they also disconnected the external pacemaker, as well as took out her chest tubes.  She has handled it well so far even though when she isn't medicated enough she gets mad.  She is on the nasal cannula with 1liter of o2.  Apparently kids with down syndrome have a harder time getting settled.  They are working on getting her lungs clear and doing chest therapy.  I'm trying not to get my hopes too high because i know setbacks can occur, but so far so good.

Thank you for all the prayers, thoughts, encouragement!  It is definitely appreciated.  Please continue to pray that she does well.

My Poor Baby

She looks so pitiful, although i've seen many pics of kids after heart surgery it is still different because it is your baby. Despite looking pitiful so far she is doing well. She will be sedated tonight and some tomorrow and depending how she does they may try to pull the breathing tube out. She also has a little bit of junk in her lungs which they suctioned out, but of course it scared me because her respirations started to drop. I guess this is normal but still scary. Anyways, continue to pray for her that she recovers well. We will probably see her for a little more tonight and then try to go and sleep since there shouldn't be much activity tonight.

Her poor tongue is going to dry out.

She is on a few meds for pain & sedation, then a couple for her heart.

Out Of Surgery

We spoke with the surgeon about 45 min. ago and he let us know that the surgery went well with no problems.  He was able to do the repair the way he wanted and said that because he was able to dilate her outflow tract instead of the other way he talked about, there is a very little chance that she will have to have any further surgeries to replace the valve.  We will get to go back and see her in a little bit. 

Thanks for the prayers and well wishes!

Another Surgery Update

Kylee is now on the heart lung bypass machine and the nurse just came out to say they started working on the heart and things look good.  Please continue to keep Kylee in your thoughts and prayers.

Surgery Update

Just a quick update.  Surgery was a little delayed this morning.  They had a lung transplant in the OR and had to finish cleaning up there.  They didn't take her back to the OR until 9:15 and they just let us know that surgery started.  She was a little irritated because she couldn't eat, but other than that she was happy as usual. 

Will update again later.

Surgery Tomorrow

So we had a long day of tests today and met with the surgeon.  First Kylee had bloodwork and was not very happy.  After that she had a chest xray, an ekg and then a sedated echo.  Poor Kylee was so sleepy when they sedated her.  They just gave her some sleepy medicine, monitored her and did the echo, but when she woke up, she was out of it.  The check in time for surgery is 7:15 with surgery starting at 8:30.  The surgeon anticipates it will take about 4 hours.  As far as how long her anticipated stay is in the hospital, the nurse told us 5-7 days, the surgeon said 10-14 days, when he originally said 2-3 weeks, so who knows how long she will be there. 

I will try to update tomorrow when surgery is underway and when we receive updates.  Please keep Kylee and us in your thoughts and prayers!  Thanks

New Accomplishment

Kylee has now figured out how to roll from her back to stomach. She used to try so hard to get off of her stomach and onto her back, now she seems to enjoy her new skill.

not sure what kind of face this is but thought it was cute!

Tomorrow we go to have all her preop tests done and we will just stay out there as the hospital is 2 hours away and we will have to arrive for surgery early Wednesday.  I still don't know the exact time but one of the assistants said probably check in time is 6:30.  So I have alot of packing to do today, not to mention try and get the van fixed as it has decided to eat ALOT of gas, get a tooth pulled and take Kate to the allergy Dr.

I will try to update tomorrow after we get settled as to what time surgery is scheduled for.

Just Because She Is Cute

1 Week To Go

Recently Kylee has been sick but thankfully is feeling better.  She is almost always congested, but she developed a cough that was worse than normal.  Due to her heart defects I always like to take her to the pediatrician to make sure she hasn't developed any infections.  Well the ped. started her on amoxicillian as a precautionary measure and then sent Kylee for an chest xray.  Well the xray showed that she had a little congestion(mucous) on her rt. lung.  I figured because of this surgery would be delayed, but since she doesn't have any infection surgery will still be next wed, the 13th.  She will go for another chest xray thursday and see the pediatrician after that to make sure everything is fine.  On the 12th she goes for all her pre workup stuff which from what i gather will be a long day.  They will also tell us what time her surgery will be scheduled for.

Kate has still been playing mother to her 3 babies, Jenna, Sienna and Shika(don't know where this name came from).  Jenna had her heart surgery and did great.  She instantly grew right after! 

                                                                before surgery

after surgery

Kate took the little baby into her room and came out after surgery with the big baby and said, "look she grew." Baby Sienna needs some toys so Kate has packed a diaper bag because she tells me, "you need to drop me off at babies r us and when i'm done i will call you."  Yesterday when i went to pick her up at school we were walking out with her boyfriend(this is what she calls him) Joseph.  He is so cute and sweet and when we got to the car he said to Kate, "do you want me to open your door for you, i'm strong." Then he told her to be careful.

As far as the adults in the house, well that's a whole other story i don't feel like getting into.  It would be greatly appreciated to have prayers and thoughts sent this way!  Thanks