Throughout the day yesterday, Kayleigh's sats started to worsen. It was getting harder and harder for Kayleigh to keep her oxygen saturation above 90, so they had to keep increasing her oxygen intake. Late last night, they reached a point where nothing was helping and they had to put Kayleigh back on the Nitric system to open up the air sacs in her lungs. This helped bring Kayleigh's sats back to normal, but they had to give Kayleigh a sedative to help her rest because she was starting to get really irritated.
"So far" the blood culture is showing negative for any infection and they are waiting to get the results back from the RSV test. The culture takes 48 hours for something to show up, so we still have about 12 hours left. Although, if nothing is showing right now, I doubt it will. No one is really sure why she is doing this, but they are keeping a close eye on her.
If all the tests come back normal, the doctor said he would point all fingers to the fortifier. She doesn't show signs of allergies towards it, but maybe she is just intolerable to it. Aimee made a good point that she loves onions, but they tear up her stomach sometimes to a point where she is very uncomfortable. The x-ray came back much better than this morning, so her trapped air is passing through. My biggest problem with this all is why is it effecting her lung/pulmonary pressures? Is her body/heart not responding well to the surgery? Are we to expect Kayleigh's hypertension to kick in at the drop of a hat, whenever she is upset or intolerable to something? No one really knows just yet and not knowing is really getting under my skin.
Hopefully we will get all the answers soon and I will be sure to pass them on. Everyone has given us some really great ideas on what this could be and we have mentioned every single one of them to the doctors. Some were ruled out by good reasoning and they are testing for others. We will all be glad when they figure it out so we can move on and get ourselves back on track.
Thank you all so much for your support and hang tight. This is not suitable for the impatient, but our hands are unfortunately tied. Good gracious, you should see me right now. I woke up with so much stress that my neck has tightened up to the point where I can no longer move it in any direction. I look like one of those women in the Kayan Tribe who have those gold rings that stretch their necks to unbelievable lengths. Pain reliever and the heating pad have not helped at all, so I am just going to have to take it easy.
After 8 long weeks, the extra testing on the placenta came back and all test confirmed it to be normal. So, we have no idea why Kayleigh was growing so far behind or why there was barely any amniotic fluid throughout the pregnancy. I guess "scientifically" we are never going to know what caused all of this.
Thank for all your prayers and God Bless,
The Freemans :)
21 comments:
I have been very tense while waiting to hear from you. It takes all us preemie moms right back to that spot you are in. We are all praying and sending love. Stay strong. Tell Kayleigh we all expect great things from her and she's being such a strong girl, she should be so proud of herself and of Mommy and Daddy for being by her side and advocating so well for her!
As always, email me if you need to vent!!! Love~Heather
Glad to have an update!! I have been checking the blog continuously today. I can understand your frustration, not having an answer to what is going on right now. She is going to bounce back just like she always has. Hang in there just a bit longer and God will take control and send all of you home to her new room. I also just wanted to say that the music on Kayleigh's Radio is so fitting for her. She IS a miracle! Every time I hear Bless the Broken Road or My Wish on the radio, I think of her. And lately they have been on the radio a lot. She is so blessed to have both of you as parents. We only wish we could be as strong as you!!
God is good...he will take care of his children.
I have been reading Kayleigh's blog ever since I went to enter my daughter's photo in the Baby Center contest. I got so caught up in Kayleigh's story that I never did get a photo sent in! I anxiously wait for Kayleigh's updates everyday and pray every night that Kayleigh will fight through all that is put in her path. She is such a strong little peanut! And, she has such devoted parents. I wish you the absolute best and can not wait hear that she gets to go home very soon. You are so deserve that simple luxury! Lots of smiles and prayers,
Kim R.
Sending prayers and telling everyone I know to as well. Thank you so much for the update.
Still praying for sweet Kaykeigh. And still praying for your and Amy's strength and courage during this time. You Faith in God never ceases to amaze me! (((((HUGS)))))
In Christ,
Rachel
Prayers are continuing.... Can I just say how well you and Aimee have been doing with this blog. It is such a great thing you are doing for your daughter. Thanks for keeping us all updated about Kayleigh's condition so we can keep pulling for her and saying our prayers.
I have been following for a while.
I had a 1 lb 3 oz. baby girl at 30 weeks. My placenta also came back normal slightly small but normal, Emma was delivered because she was just big enough to get more nutrients outside than inside. Sometimes they never find out and it is a random occurance.
My daughter had major issues with the fortifier. Her belly blew up so much that she too had to be put back on support, her diaphram was pushed up into her lungs so she couldn't breath. I betcha that is what happened. As her belly goes down she will be able to breath again. Ask the docs about that also making her PPHN return because of the heart, breathing connection which can cause cor pulmonale.
My thoughts are with you guys
Keep fighting Kayleigh. Sending lots of prayers your way.
Rhi
Preemie mommy to Sutton my 30 week miracle.
I am glad to hear it is not an infection. I can only imagine the frustration in the unknown... There is nothing worse then, seeing a problem and not knowing exactly how to fix it.
In my opinion, preemies babies with any medical conditions suffer from the dominos effect. Just recently my daughter caught stomach flu from one of her siblings. her siblings recovered after 24 hours and lost of rest. Hannah continued to get worse, lost 3 pounds, stopped eating and started to struggle with her breathing.. she ended up in the hospital... It really sucks!
More so, her doctor was out of town and so I was seeing other doctors, who would just look at me and say I was over reacting and that she was just needing more time. When I read that Aimee has a gut feeling and how it turns out to be right... always.. always follow it. the road will not end when she comes home, but at least she will be with you. the day will come.. it gets better, it becomes less frequent and there are times when life actually feels normal. (whatever that is)
Prayers as always and faith that the right things will come...
always,
Karen
Adam,
for you neck.. go to Walmart or something there of and buy some "freeze it" it is an advanced theropy pain relief roll on, it works wonders for stress and anxiety neck pain and has also been know to relive my tension headaches from time to time... I hope you start feeling better!
-karen
I'm so sorry you guys are going through this. One of the hardest things about our NICU journeys has been the total lack of control & helplessness we feel as parents. It is especially hard when our mommy & daddy instincts tell us what our kids need or don't need. We are so grateful to God for the amazing Drs. that so skillfully care for our children but its still tough sometimes. Praying that the problem is the fortifier & it will be resolved soon and Miss Kayliegh can just grow a little slower on the mommy milk.
Cyber hugs and prayers.
God is good! Always.
Christy R. in Mississippi
You guys have amazing strength. As does Kayleigh. Praying that God continues to give you strength and Kayleigh comes through this quickly and healthy.
I am continuing to pray for you and sweet baby Kayleigh!! The reason why you won't ever find out "scientifically" why Kayleigh has been chosen to take this journey is because God is the only one that knows. He has control, and He knows exactly what His plans are for your sweet baby girl. Trust in Him, and He will show you the way. Science and medicine are amazing, but they don't hold a candle to our Great God!! :) I pray that Kayleigh continues to progress, and that some light is shone on this situation!
Brianne
I came upon this by another blog and every since, I have logged on several times a day to check on the three of you. I have kept the page open all day so I could get an update as soon as you posted. You all are continously in my thoughts/prayers and in agreement with the other posters, Amiee & Adam, you truly are wonderful parents. Stay strong!
Aimee and Adam,
Thank you so much for the update,I have checked probably 25 times between 8 your time and now 4 your time. My best friend and I were exchanging texts earlier this morning at how worried we are. A persons greatest fear is of the unknown, and right now that is exactly where you guys are, and I wish I could be the all knowing and tell you the answers to your questions. The situation with the fortifier seems to make sense to me, not to mention many other people have mentioned it as well. In the past it has proven problems for her, so maybe she is just a finicky eater already and prefers nothing but mommys moo moo!!! (As Adam once put it!) She will pull through this like everything else. Keep the faith and find strength through the Lord. I will continue to check on here tonight for an update.
Much cyperspace love and hugs for all of you.
Jennifer
thank you so much for taking the time to update - so many people have been waiting anxiously. I will continue to send you hope, prayers, patience, and relief. Hang in there...
Adam and Aimee thank you so much for taking the time to update - I have been waiting anxiously to hear how Kayleigh is doing. You do such a fantastic job on this blog. My thoughts a prayers are with you and beautiful Kayeigh. As I read through the comments a few people mention babies having problems with the fortifier. It certainly sounds like this is the issue Kayleigh is going through. She is such a fighter even though she is tiny she has such innner strength to keep going. She really is a blessing from God.
Aimee and Adam,
I just wanted to you to know that I am keeping you guys, and of course Miss Kayleigh, in my prayers. I was working Tues. night when they transferred her back to NICU, but unfortunately my assignment was in the other nursery. They knew I would want to know, so they came to get me and tell me they had sent her over. I cannot imagine the toll all this is taking on you, but do know that you have so many people here for you and Kayleigh. The power of prayer has shown itself many times before, and will continue to do so. Everyone in NPCN is following Kayleigh and we are hoping to see her back with us before too long. She has had to deal with so much for such a little girl, but you know what? She is one tough little thing! She has proven how strong she is so many times, and will do so again. I have said it before...she knows she has a purpose here, whatever that may be, and she is going to fulfil it! I think too that she gets her strength and toughness from her family. What you guys have been through...but there are so many of us out here who are here for you guys, don't forget it! If there's anything I can do, just let me know! Hang in there!
Paula L. (NPCN)
I am so sorry that your sweet Kayliegh is having a rough day. But I wanted to share my little bit of NICU knowledge to the rest. My little Matthew is in the NICU right now and he was doing great and then all of a sudden his lung sacks closed up too. After lots of tests that showed nothing they found it was reflux. They watched him for a while to see if he could control it on his own but 4 days ago they started him on prevacid and simply thick for his milk and now they are talking about him comming home. I don't know if it could be the problem but any little bit of advice can help. They told us that Matthew would hold his breath and that is what made his lungs collapse. I hope and pray that all will go well. You are in good hands!!!
My daughter had similar problems with her two pregnancies. We lost the first baby. Avery was born early at 2 pounds. None of the tests they did ever showed us what the problem actually was. I understand that frustration. Still praying for your sweet baby girl.
Adam and Aimee,
I just wanted to remind you that Albert Joel is EXERMEMLY small for his age, he is 4 1/2 and is just know going into a size 3t he is a full head and shoulders smaller then the rest of his preschool class. He has been to Rainbow baby and children and they did all kinds of bone scans and blood work. And guess what, he is just small for his age. Also remember Grandma Dutch was only 5 ft and her mom and dad were even smaller. I not sure if you mentioned those thing to the dr's but it is common in our family to be small, Look at Tricia. Also Albert Joel only weighs in at 28 lbs and like i said he is 4 1/2. And he is only 36 inches tall so i would stress to much about the fact that she is small Albert was full trem and was only 5lbs 3oz and 18 inches. He came home at 4 lbs 12 oz so try to keep it in mind. I know it doesn't help much but i hear it all the time ppl wanting to know why he is so small and am i sure he doesn't have problems, but un frotunatly it sound like little Kayleigh is taking after Grandma Dutch's side of the family just like Albert Joel is . I hope it helps a little bit .
Love
Brandi Ortiz, in Ohio
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