One step forward, two steps back

Kennedy had to be put back on the vent last night. She was struggling with her breathing and had a really bad day yesterday. She just doesn't have the lung strength right now. It's so upsetting.  She had such a great day Monday!  I got to hold her for 3 hours and she maintained her oxygen the entire time. Yesterday she was ok when I got there but things slowly started to go down hill. Her oxygen requirements were going up and her breathing was very shallow. Her belly was all filled with air so they vented that out. That helped but ultimately she just couldn't keep up. They did a chest x - ray and her little lungs just couldn't stay inflated so they intubated her at about 10 last night.  I don't know what their plans are from here. Art and I will talk to the Dr when we get to the hospital this morning.  For now the nurse says she's stable but exhausted. Her vent settings are pretty high right now but she needs to recover from yesterday.  We're thinking she'll be on for at least another 2 weeks before they try to take her off again. My heart is just broken.  To see her have to struggle that way, it's just so sad. I wish I could switch places with her and take all her pain away.  I can't stand to see her struggle. But we have to be strong for her. She's the one in there fighting every day. Her strength just amazes me!

She's off the vent!!!

I'm so happy to report that as of 2 pm this afternoon Kennedy is off the ventilator!!! Her nurse says that she's doing great and she looks so much better! I can't express how happy Art and I are. This is a huge step for her!! Fingers crossed she continues to get stronger and stronger. She's a tough little cookie and has such an amazing support group. Thank you all for your thoughts & prayers!

Love to all,

The Crist's

5 weeks!

Happy Sunday everyone!  Kennedy is 5 weeks old today and doing very well! She's 3 lbs 5 oz and up to 27 ml's every 3 hours. On Friday they gave her another transfusion and started her on steroids. Since then she's come down on her oxygen requirements and her vent settings and has been doing really good. During our visit today the nurse told us they're going to take her off the vent around 3:00 this afternoon. Arthur and I are really hoping she does well and is able to stay off. She (and we) could really use your thoughts and prayers! This is a huge step for her so please pray that her lungs are strong enough and that she stays off the vent!! I have to call at 5:00 for an update so I will keep everyone posted on how she's doing.

Love to all!

1 month old!

Happy 1 Month to our beautiful little miracle!  I can't believe its been a month already. It feels like yesterday but it also feels like she's been in the NICU forever.

We'll start with the good news. Kennedy is doing good!  She's gaining weight and handling her feeds well. She's up to 17 mls every 3 hours.  They consider this full feeds so they're going to start taking some of her I V's away. As of last night she was 3 lbs 2 oz!!! She's really starting to fill out and she looks cuter than ever! The Dr was happy with her weight.  He called her a "big baby" for her age! She's like her Mama, no problem packing on those pounds!  And she's very strong.  She picks up her head and tries to turn it to the other side! Not a good thing since she has a vent tube stuck up her nose! She also pushes down with her legs when she's on her belly and picks her butt up in the air. I think if she had it her way she'd try to crawl out of the NICU!

She had an eye exam and another CAT scan and the Dr said everything looked good which is great news!

However, she's still on the vent and although it has helped her, it also causes damage. The longer she stays on it the more she gets used to it and the harder it will be to get her off. They have tried to ween her off but her lungs are still so weak and premature that when they lower the vent settings she struggles so they have to take it very slow with her. I was speaking with the Dr yesterday and his plan is to work on building up her nutrition over the next 3-4 days to get her stronger and then they're really going to push her to get her off. They started her on Lasix yesterday which makes her pee alot and gets rid of the fluids that she's retaining. It also helps dry out her lungs so we'll see today how that worked. If she continues to struggle they're going to consider giving her medication (a steroid) to help make her lungs stronger. His goal is to have her off in a week or two.

So right now that is our biggest concern, building up the strength of her lungs. I can't wait until she's off that damn machine! She's doing so well with her weight I just want her breathing to catch up. I want her home. Easter was so hard not having her with us. Especially since Kenzie still can't come up to see her. It's just gut wrenching.

I did get a little Easter surprise.  Since she's been on the vent I haven't been able to hold her and I've been very upset about it lately. Over 10 days now and I haven't been able to cuddle with her or hug her or give her kisses. I see her every day and I just want to scoop her up and comfort her. Do you have any idea what it's like to not be able to pick up your child whenever you want to? When she's crying or when it looks like she's in pain? Its the worst feeling. But when Art and I were there Easter Sunday the nurse had to change her incubator and she asked if I wanted to hold her while they did that. It was so nice to be able to hold my little girl again! It was only for a little while but Art and I got to shower her with kisses and snuggle with her. It just made a very tough day so much brighter!!

4/16/14

Sorry I haven't posted in a few days. There hasn't been a lot to report which is a good thing. Kennedy is still on the vent but they are working on getting her settings down. She was a little high on her oxygen levels yesterday so they gave her another blood transfusion.  I called her nurse this morning and she said Kennedy had a good night. Oxygen levels are down a bit and she's tolerating her care very well. She's also up to 2 lbs 10 oz!! Our baby girl is getting bigger!

3 weeks old!!

Our little girl is 3 weeks old today! Every day she gets bigger and stronger. Today she was 1075 grams. That puts her up to 2 lbs 6 oz! She also seems to be doing much better on the ventilator. Her oxygen requirements have dropped to anywhere between 23-30%. She's still desating a bit but when she does she brings herself right back up. She seems to do best when she's laying on her belly. Before we left the hospital today the nurse switched her to her belly and she just passed out! I call it her magic spot. When she's on her back she kicks her legs up in the air. I tell the nurses that she's doing her Rockette routine.

Today when we got to the hospital they said the chest scan that they did this morning came back worse than her last. It was very white and cloudy. The doctor thought that she had pneumonia from the look of the scan but she ordered another one to make sure it wasn't just a bad picture. Not what we wanted to hear at all! However, the doctor came back into her room and said the second scan was the best scan that Kennedy has ever had! She said her lungs look perfect!! Better than an adults. SUCH great news!! She also said that her urine and blood cultures actually came back negative so there's no bacteria or infection growing. All of her tests are coming back great! They still can't pin point exactly what was wrong with her that caused her problems but as long as she continues to improve that's all that matters.

They've begun to drop her settings down on the ventilator. The doctor said that she'll probably be off by the end of the week if she continues to do well. They're (and we're) in no rush. We'd rather them take their time and make sure she's ready so that she doesn't end up back on the vent. They did start feeding her again today and so far she's been tolerating them well. The nurse today was impressed with her. She's a little feisty girl and when she wants to be left alone she'll let you know! The nurse said she's shocked at how strong she is even though she's so tiny. I believe she gets that from her sister!

So it was a good weekend! We're just praying that she tolerates her feedings well and she continues to do good with her oxygen levels. Just taking it day by day!

3 Weeks Old!!

Update on Kennedy

Yesterday was one of the hardest days of my life.  I got to the hospital at about 9:30 and at this point Kennedy was on an oscillator ventilator.  This ventilator works with vibrations so when I saw her for the first time yesterday she was just laying in her incubator hooked up to even more tubes and wires and her entire little body was vibrating.  I completely lost it. To see her this way was just so hard and so sad. I spoke with the Dr and they filled me in about her deflated lung and all the other tests they were doing to see what was going on with her. For now it was just a waiting game so I sat with her, held her hand and just talked to her. I was a complete mess. I had nurses and social workers coming into the room checking on me to see if I was ok. It is just heartbreaking.

I went to get some lunch and when I came back into her room I almost passed out.  5 Dr's were in there, the roof to her incubator was up and one of the Dr's was bagging air into her lungs instead of being on the vent. They told me she wasn't doing well on the oscillator so they took her off and have been bagging her for about 20 minutes. Her stats seemed to improve so they were going to hook her up to the conventional ventilator. She obviously didn't like the constant vibrating any more than I did!

They finally got her hooked up to the new vent and ran blood gasses every 20 minutes. This test measures the acidity and the levels of oxygen and carbon dioxide in the blood. It's used to check how well her lungs are able to move oxygen into the blood and remove carbon dioxide from the blood. They were coming back very well on the new vent. At one point her numbers sky rocketed and the Dr said that was the sign that her right lung had inflated again and they had to readjust her numbers and bring all her levels down.

After that she seemed to be doing better.  At this point Arthur was there and she was opening her eyes and looking around.  I had asked the sister that was in the hospital to come up and say a prayer with us. She met Kennedy and we said a prayer for her to get stronger and continue to fight. By the time I left the hospital her numbers looked ok and she looked much better.  We just needed her to have a good night with no set backs.

I called her nurse this morning and she said she had a relatively good night. Her oxygen levels are down and blood gasses look good. She did have one really low episode but they came in, bagged her for 2 minutes and she bounced right back. The nurse also said that the preliminary results from her blood culture came back and there is a little infection there.  They need to wait for the final results to see exactly what it is but they have her on 3 antibiotics in the meantime.  Not the best news but at least now we know that she definitely does have something going on and that's what's causing all this.

Thank you all for your continuous thoughts and prayers! Kennedy has a lot of love coming her way. She isn't out of the woods yet but she's definitely in a better position than she was yesterday!

Some prayers are needed

Last night the NICU Dr decided to put Kennedy on a ventilator.  Her oxygen was all over the place again and they said she was working very hard to breathe so they wanted to give her a rest. When I got to the hospital this morning they told me they redid the chest scan and they saw that her right lung was deflated a bit. The Dr still seems to think it's all the mechanics and her lungs are just very immature but they're running more test to look for infection. For now she's on the ventilator and it's just a waiting game. Please send some extra prayers! It is breaking my heart to see her this way.

4/10/14

Kennedy has been doing ok. She's put on some more weight. She's up to 980 grams which is 2 lbs 3 ozs so that's great news! She's still having a lot of issues with her oxygen requirements.  Lately she's been up very high on the amount of oxygen she needs so the doctors have been running tests on her the last two days. They did another chest scan which came back good. They did another urine culture and that came back negative.  They did an echo again today along with a bunch of blood tests so we're waiting on the rest of those results.  The doctor did get her blood count back and she said it was low so they're giving her another transfusion as I write this. She said that should definitely help with her oxygen level. The doctor seems to think it's nothing to be too concerned with. All her tests so far are coming back ok and she looks great, very active and very feisty. She thinks it's just something preemies go through and that as she matures more her lungs will grow stronger and the numbers will go down. Let's hope that after today's transfusion they do improve more. I hate to see her having all these tests done.  Although I think they bother me more than her.  I sat with her and held her hand while they were putting the IV in for her transfusion. I had to look away because I couldn't bare to look. She didn't even flinch. It amazes me what these little babies go through.  Poked and prodded all day with wires and needles everywhere. She is the strongest person I know!

We have a 2 pounder!

Kennedy is officially 2 pounds!! Only 2 more ounces and she'll be back to her birth weight. She's been handling her feedings much better so that's great news! She's been very up and down with her oxygen requirements over the last few days so the doctor today ordered a chest scan. She said her lungs look fantastic! She said her last scan they looked a little cloudy and had a little fluid in them but today they were very clear. Love hearing news like that!

But with all good news there seems to be some not so good news. The doctor called me at about 10 today and told me that the results from the blood culture they had to do on her last week came back with a positive test for MRSA. MRSA is basically a skin bacteria that is very common in hospitals and even more common in NICU's. It is of no danger to Kennedy. She has to be put on antibiotics again and since it can be passed by skin to skin contact she has been put in isolation and when we are in her room we have to wear a gown and gloves. The doctor seemed to think this was a little dramatic because I'm still aloud to touch her and have kangaroo time with her but it's hospital policy. Despite the hazmat suit I had to wear I had a very good visit with her. She looked so good and had her eyes wide open for me! She looked so beautiful and cute! Love her so very much!!

2 Weeks Old!

Kennedy is doing much better! The antiobiotics seemed to have worked and by Sunday she was her normal, fiesty self! They redid her bloodwork and everything looks good. She's getting her feedings again and seems to be handling them pretty well. She gained a little more weight and is now up to 890 grams. She needs to get up to 907 to hit 2 pounds. We're hoping by tomorrow morning she'll be a 2 pounder!

Sunday her Uncle Rod made it up to the hospital and he got to meet his niece for the first time. Such a special moment! The rest of the day I spent holding my little girl. I could sit there with her like that for hours. It was a nice way to end the weekend because I had a rough couple of days. I need to get used to the emotional highs and lows of having a premie. There were a few times in the last few days that I just completely broke down. Seems crazy to me that my daughter is the one in the hospital fighting every minute of every day and there's nothing I can do to help. We just sit with her, hold her, talk to her and hope that she knows we're there with her. This is the hardest thing I've ever had to go through.  Luckily we have amazing friends and family around us supporting us! And thankfully I have Arthur and Makenzie!  Their love gets me through anything!

04/04/14

Kennedy had an ok day today. She gained weight overnight and is now up to 1 lb 15oz. She had a little trouble holding down her milk so they stopped her feedings for the day. Her white blood count was up which is usually a sign of infection so they started her on antibiotics and started running some test. They did a belly scan to make sure the intestines look good and that came back ok. They did a urine culture to see if she has a urinary track infection and they redid her blood work at 6 so we're just waiting for the results. They had to do a small transfusion last night because they noticed some of her levels were low. Because of everything going on with her we just let her rest today. She'll get the antibiotics tomorrow as well so hopefully that'll make her feel all better! They also switched her room yesterday so now she has her own room which I like so much better!

That's it for today. I'm going to get an update from her nurse when I call at 9:00. Hopefully all is well and she has a good night!

Daddy time

Kennedy had another good day! She gained a little more weight and she's still tolerating her feeds well so they've increased her again.

Today Dad got to hold her for the first time! It was so adorable to see! Now all we need is for Kenzie to meet her. The hospital has a ban on kids visiting the NICU during flu season so Kenzie still hasn't been able to meet her sister.  Breaks my heart! But they say it should be lifted the 1st or 2nd week in April. I can't wait till I have my whole family in one room together!

04/02/2014

Kennedy's had a couple of real good days! Her heart murmur has closed enough for them to stop the medication. She had a repeat head, heart, stomach and chest scan and all came back great! She's been doing really good tolerating the milk they've been giving her. She's up to 3ml's every 3 hours. And she's also been putting on a little more weight so she's back up to 1lb 13oz.

Monday Nana took off work and went with me to the hospital to spend time with Kennedy. We had a really nice day and Kennedy looked great! The doctor also seemed very happy with her progress.

Yesterday my wonderful friend and sister Alli was kind enough to take me to the hospital. That was really sprecial to me because we've asked her to be Kennedy's Godmother and I really wanted Alli to meet her Goddaughter. While we were there the nurse asked if I wanted to hold her and have some skin to skin time with her. I hadn't been able to hold her since last Tuesday so I was really excited! The nurse showed me how to pick her up and pull her to my chest and we just sat there together. She's so precious and beautiful! I loved every second I spent with her like that. She just layed there and slept. It was just such a wonderful visit! Tomorrow Art is taking a half day so we can go up together and I'm hoping that he'll be able to hold his girl like that for the first time.

I will update again tomorrow but here are some picture of my snuggling time with my princess!

 

 

Welcome to the world Kennedy Rose Mary Crist!

On March 23rd at 3:18 in the afternoon our beautiful daughter was brought into this world! She was 2 lbs 2 oz 14 inches long and 14 weeks early! We always knew Kennedy would be born a little earlier because of my history (this was a high risk pregnancy) and because I was diagnosed with placenta previa but we would have never thought she'd come at 26 weeks. Obviously she had a plan of her own and the past week has been a completely whirl wind!

On Sunday 3/23 I awoke to some bleeding.  Now because of the previa I was expecting some bleeding in the 3rd trimester but because of my history it obviously freaked us out. For those of you who don't know, last year we lost our son at 18 weeks due to an abruption.  Needless to say we rushed to the hospital. Long story short, they found a blood clot, it past and the bleeding stopped. The doctors and I thought it best to have me stay the night to make sure everything was ok and that the bleeding was definitely done. They brought me to my room,  I had some lunch and my Mom and Kenzie came up to keep me company while Art went home to get some overnight things for me. That was the last bit of normalcy we had!

I started bleeding again and this time they couldn't get it under control so they transfered me back to labor and delivery. They started me on magnesium to protect the babies brain. Arthur finally came back to the hospital at this point and the doctor told us they couldn't stop the bleeding and that the baby would have to be delivered now. The fear that came over me at that moment is undescribable. She couldn't be born now, I was only 26 weeks. She needed to stay with me for longer. I needed to protect her and I couldn't.  It was the worst feeling of my life.

The NICU doctor came into the room and explained to Art and I exactly what would happen and what to expect after the baby was born. This conversation was so surreal to me. I just couldn't believe this was all happening. Finally they wheeled me into the OR and started the surgery.  All I could do was cry. Art was there holding my hand, keeping me calm. At one point the anesthesiologist said to me "I have something I want to show you." He put his phone in front of me and showed me a video of his daughter playing the piano.  It was beautiful. He said to me "That's my daughter. She'll be 9 years old. Her and her brother were born at 24 weeks." I just cried tears of joy! I will forever remember that moment.  He comforted Arthur and I when we desperately needed it and gave us hope. He was an amazing man and talked us through the entire surgery.  I wish I could see him again and give him a huge hug.

Finally,  after what seemed like forever,  the doctor said "birth!" Kennedy was brought into the world and taken immediately from the room. After a while the anesthesiologist went into the back to see if Art could go see Kennedy. He came out and got Art and took him to see his daughter.  I was waiting for Art to come show me pics. When he finally came out he said she was doing so well they were going to bring her out to me. I thought they'd roll her out in an incubator but at least I'd get to see her. Then I heard "Here she is" and I turned and the doctor was holding her in her arms! She looked amazing!! So tiny and so beautiful with her big eyes open and looking around. It was so wonderful to see her and see that she was doing well.  I just wanted to scoop her up and hold her forever. Such a tiny, wonderful little miracle!

After surgery they took me to recovery and finally up to my room. I was on so much medication by this time that the rest of the night is some what of a blur. I do remember asking to be taken up to the NICU that night. I just needed to see Kennedy again and see that she was ok. They took Art and I up to see her and we got to talk to her nurse. She was doing real well. Breathing on her own and room oxygen. All very good news!

Monday she continued to do well.

Tuesday when I went up in the morning to see Kennedy they told me she was doing so well I'd be able to hold her for the first time! When I went in the afternoon I was so excited!  And so scared!  She was so tiny and fragile.  It took them 10 minute's just to get her out of the incubator with all the little wires and tubes but finally they put her in my arms. What an amazing moment! To hold my sweet miracle in my arms. I just sat there with her, talked to her, sang to her. She was so peaceful and beautiful!  I didn't want the moment to end.

 

The next day I was released from the hospital. I was so sad to be leaving without her. I wanted her home with her Dad, sister and I. Leaving that hospital was the hardest thing I ever had to do. But I was happy to be going home to my Kenzie! I needed some serious mommy daughter time with her.

Thursday we had a bit of a scare. At about 8:30 we received a call from the NICU doctor and she told us that Kennedy was very pale this morning. Art and I rushed over to the hospital. They ran a bunch of tests on her to see why she looked so pale and she had to have a blood transfusion, which they say is very common in premies. They just don't replenish the blood taken from them quickly so they need extra. She had a head scan, belly and chest scan and a heart x-ray. All of her tests came back good except a little bump with the heart scan. They noticed that she had a heart murmur. They said this is common in premies. They're just born before the artery has time to close. So they had to start her on medication to help close the whole. Each cycle of the medication is three doses given every 12 hours. They would give up to 3 cycles (9) doses before they'd consider surgery. At 10 pm she had her first dose.

Friday and Saturday were stable days. She received her next two doses of her heart medication and continued to rest.

Sunday, my baby girl is a week old and we received GREAT news!!!  When I called for my morning check up the nurse told me that she didn't hear the heart murmur anymore and that she even gained a little bit of weight! They were also going to start trying to feed her some milk to see if she can tolerate it. All really great things!

So that catches you up through the first week. I'm going to try really hard to update this every day so you can all follow along with Kennedy's progress.

Arthur, Makenzie and I would just like to thank you all of your continued thoughts and prayers! We are touched by the outpouring of love and support we have received. It has meant so much to us. Please keep them coming because they're obviously working!

Love to all,

The Crist Family