Christmas has come and gone….It was nice, crazy hectic and sad. I’ve been really sad the last few days…knowing that we should have had a happy Christmas with my 2 little twin girls at home with me. My due date is fast approaching when I was due, but with twins, I realistically would have delivered mid-December.
I came across this wonderfully sweet poem from one of my prom-list friends. I think the holidays have made it really hit home that I have only one child, who is sick. Both of my children should have been home with me for Christmas, instead one is in the hospital and the other is in heaven.
Christmas with Jesus
I see countless Christmas trees around the world below
With tiny lights like heaven's stars, reflecting on the snow.
The sight is just spectacular, so please wipe away that tear,
And be glad I’m spending Christmas with Jesus Christ this year.
I hear many Christmas songs that people hold so dear,
But their music simply can't compare with the choir that sings up here.
I have no words to tell you of the joy their voices bring,
For it is beyond description to hear the angels sing.
I know how much you miss me; I see the pain inside your heart,
But I am not so far away: we really aren't apart.
So be happy for me, my dear ones; you know I hold you dear,
And be glad I'm spending Christmas with Jesus Christ this year.
I send you each some special gifts, from my Heavenly Father above,
I give you precious memories, and my undying love.
And your life, a gift more precious than even purest gold,
I ask for you to live it; don’t let your dreams all go untold.
Please love each other, as I would want you to;
I can't even count the blessings life has in store for you.
So have a Merry Christmas and wipe away that tear.
Live so that we’ll all be spending Christmas with Jesus Christ one year.
-Based on a poem by an unknown author, and revised by a Prom Mom
Every time I read this poem I start to cry.
Brian had to work on Thanksgiving, Christmas and New Years Eve this year. He would have been off for the holidays, assuming the girls were home with us. Kaitlyn and I spent Thanksgiving together alone in the hospital; for Christmas my family were all up visiting, but things were very hectic, trying to fit in everyone’s plans and trying to see Kaitlyn during her feeding schedule, which is every 4 hours. The NICU only allows 2 people in at a time, so things were difficult. By the time everyone left, I felt lacking in spending time with my daughter, so I went for 10 hours yesterday.
It was wonderful for so many of my family members to see Kaitlyn for the first time, or for the first time since she was first born. My mom, brother, step-mother and step-sister all got to hold her for the first time. That was some special moments.
During my visit yesterday, Kaitlyn received her first set of Immunization shots, it was so sad to see her upset with the shots, but she did fairly well. At her next feeding 4 hours later, however, I’ve never seen her so upset. She must have been sore from the shots. She cried and cried, and her heart rate raced above 200. Of course absolutely no sound came out when she cried, so I don’t know what broke my heart more, her pain and suffering or the fact that she has no voice.
Yesterday I was really sad. I'm not sure why yesterday more than other days. Maybe its because I started the day by reading the Christmas poem above. Then my first visit with Kaitlyn didn't go well, there were not any rocking chairs available, so I had to hold her in an office chair (not very comfortable). She didn't wake up enough to nurse. Then when i went to the pump room, they had it all torn apart, as they are going to put a new baby in there (so I had to pump sitting in a room in disarray also sitting in an office chair.). Then I went to walk down the street when Kaitlyn was sleeping to get some coffee. I saw no less than 7 babies in strollers....I sat in Starbucks and cried in my coffee. My surviving daughter is in the hospital....how I wished I could have a normal motherhood experience by walking my daughter and going to coffee. Instead I have to time my visits with her around her feedings so I can hope and pray she'll be awake enough to open her eyes.
Medical updates on Kaitlyn
Eyes: Good news, the Doc examined Kaitlyn again earlier this week and said he is very pleased with the progress. One eye is completely cured of ROP, and the other is doing very well. So that’s very good news.
Lungs: She is still requiring oxygen. At this point, it’s looking more likely that she’ll have to come home on oxygen. Her CLD (Chronic Lung Disease) is definitely evident (remember that’s its caused from her being on a ventilator for so long). But if it wasn’t for the ventilator, Kaitlyn wouldn’t be here with us today.
Long term prognosis for her lungs still isn’t known. She will hopefully most likely out-grow it in 3-5 years. She will likely have asthma, and be very susceptible to infections. If she comes home on oxygen, we don’t know how long she will need to be on it. Again, hopefully just through the winter months.
She will also have to have a shot called RSV every month for this winter and the next. RSV is a very bad respitory infection that could be deadly if Kaitlyn can get it. The shots cost $1,000 each and she'll need them monthly. (our insurance should cover it)
All of this means that we will have to be very limited on visitors and outings with Kaitlyn. We have to keep her in controlled environments where people religiously wash their hands and ensure that no one is sick around her. We were supposed to go to my cousin’s wedding in Minnesota in May, but it’s looking likely now that we will not be able to go.
Feeding: Kaitlyn still isn’t able to feed all of her milk on her own. This means that she more often than not is still gavaged…fed the milk through a tube that is inserted through her mouth into her stomach. She HATES being gavaged. It makes her gag every time and looks utterly miserable. It just breaks my heart. She is up to 60 cc’s of milk every 4 hours (that’s 2 ounces). When I’m in she sometimes breast feeds. She has to be awake in order to breast feed (or nipple my milk from a bottle). If she’s not awake – forget it. She’s just not interested. When she is wide awake she actually latches on and nurses from mom quite well. She and mom both enjoy it a lot. This has been about 6 times now total. Sad. My daughters were born almost 3 months ago and I’ve breast fed a total of 6 times. At least it has gone well when she’s been up for it.
Kaitlyn will not be able to come home until she can nipple all of her feeds. She now only occasionally will take 10-20 cc’s of a bottle, then has to be gavaged the rest. She just gets too tired, which means that her chronic lung disease is definitely still evident and causing the problem. Her lungs have to work the equivalent of running a marathon each time she eats.
Kaitlyn does now weigh over 5 pounds.
Well, Kaitlyn still doesn’t make any sound when she cries. It’s very evident when she cries, she even has tears, but her little mouth opens up and all you hear is air coming in and out with her gasps.
They don’t know what the problem is, but the cause is from one of 2 things: 1) A nerve was nicked when she had her PDA Heart surgery back when she was less than a week old. The surgery was to close her PDA valve in her heart – which often doesn’t close on it’s own in premature infants. Or 2) it could be from being intubated/extubated (ventilator) so many times that there is damage to her vocal cords.
Next week after the holidays are over the Pulmonary Doc is going to due a bronchoscope procedure to look down and see what is going on. They are also concerned that this is affecting her ability to eat. As of now, they have not told us much more than they will check to see what is going on. We don’t know any long-term prognosis yet. Supposedly the scope is fairly large so she will have to be sedated again. I’m afraid of that, as the last time she was sedated it took her over a week to become more alert again.
Kaitlyn will likely have development delays due to being born so early. Luckly she never had a brain bleed. So only time will tell. Her development growth will always be based on her due date (1/4/06) and not the date she was born. This means when docs compare with other babies for sitting up, talking, crawling, standing, etc. it is always based on her Gestational Age (1/4/06).
In that so many of you ask when Kaitlyn will be able to come home, I thought I’d address that question. Her estimated coming home date has always been her due date (1/4/06). As of this time she definitely WON'T be coming home by the 4th.
Kaitlyn has to be able to take all of her feeds on her own – she is far from doing this now. If she is able to take all of her feeds but still needs oxygen, she would be released with oxygen.
She will also need to go a full 7 days without any A’s or B’s….
Apneas (A’s) are when she desats on her oxygen levels
Bradys (B’s) are when her heart rate drops.
She is still having A’s and B’s now, as all preemies do, but they usually get better as preemies near their due date.
My due date is 1/4/06.
This date is going to be very hard for me. I think this lead up time is already hard. Knowing that with twins they would have been considered full-term at 38 weeks, which was right before Christmas. They should already both be here with us at home. Now only Corinne is home with us, waiting in her sister Kaitlyn's room so that she can continue to look down and protect her.
I'm not normally so down, sorry for the sad post today.
I’ll post some more pictures soon.