Cohen's coming home video

For our Friends and Family who don't have facebook: Brian has put together a montage of Cohen's journey so far. Click the play button below and make sure you make it full screen. You may need some tissues. He did a really great job.

Cohen is 6 lbs today. She is doing very well at home. We love having her here. Brayden is still adjusting. lol. Thank you for continued prayers. We love you all!

She's Home!

Our sweet little girl is home with us. She is sitting in her swing (not swinging) right next to me as I type this. It is hard to believe, for me. I smile every time I look at her; she is precious and beautiful. It's crazy that just 10 short weeks ago, our sweet baby was born weighing just 1 lb 14.7 oz; she even got down to 1 lb 10 oz. I am so happy to report that she was tipping the scales today at 5 lb 6 oz! She is definitely still a little peanut, but she is 3 times as big as she was when she was born.

She was supposed to go home on Wed. See-- Here she is all dressed to go home Wed.

Unfortunately, she had a little reflux issue, scared her Mommy, and had to stay for an extra couple of days. Other than that little issue, she has been great! She would be a 35 weeker if I were still pregnant, which means she has done better than anticipated, coming home already. She is on an apnea monitor, which makes me breathe a little easier. 

None of the kids have been able to meet her due to the rules of the NICU; so today they were very anxious. Carter absolutely adored her, which surprised us; he was sweet and gentle and just wanted to be around her. Brooklyn was even better than we expected. She has the kindest little heart and just talked to Cohen and sang to her while holding her. Bobo bear (Brayden) didn't respond as well. We've never had a tough time bringing new babies home. Bobo is the first child to have an adverse reaction. He just doesn't understand :( He was extremely happy at first; however, when he realized he couldn't grab and hit her-- this was his reaction--

We had to deal with a lot of crying from him all day. I know he will adjust to Cohen, eventually. We will just have to take it one day at a time and keep a very close eye on him.

Here are a bunch of pictures from our day

We are all settled in and ready for the night shift. I'm hoping she sticks to her NICU schedule. I guess we will see how she does. Thank you for your continued prayers. God continues to be faithful to us and we are so thankful!

Bottles!

I'm sorry for the silence. Not much has changed with Cohen and we have been so busy lately. She is now 4 lb 7 oz; 2 kilos is the minimum requirement for her coming home and she hit that number within the last couple of days. She is still breathing completely on her own and the top of her isolet is still popped; she is maintaining her temperature marvelously. Her clothes are so cute on her. She is actually fitting into her preemie clothes.

Cohen is surprising her doctors with how well she is progressing. They don't usually start trying to bottle feed until 35-36 weeks gestation, but Cohen was giving them signs that she was ready to try. She was sucking on her hands and a pacifier, as well as being extremely alert. 

She was almost 33 weeks when she took her first bottle. She only did a few ml's, a couple of times a day. As of yesterday she was eating every other meal from a bottle... the whole meal! The doctor told me this morning that if she is alert today, they are going to try EVERY feeding with a bottle. She is quite the burper... takes after all of us:)

He even told me that she could be home as early as a week and a half from now! I am not prepared AT ALL! We still have to get a carseat, a pack n play/bassinet and ALL of the other things that are required for having a newborn baby.... ahhhh... I am trying not to stress out. We are so beyond thankful to God that she is doing as well as she is. The other stuff will work out, I know. She is so precious and we are thankful that we have been able to hold her and bond with her so much lately. I will continue to update as we get ready to bring her home and I'm sure there will be a ton of pictures to show off once she comes home. This little girl has been a blessing to so many people, already and we know that God will continue His good work through her. 

We love you all and thank you for the continued prayers!

About Our Date Night...

My in-laws were graciously willing to watch our 3 big kids for an entire day and night (and then another day) and Brian and I made plans to go to my doctor for my 6 week check up, eat a delicious dinner at a local Italian restaurant and watch the last Harry Potter movie in our hotel room. I haven't been feeling well for the past couple of weeks and I thought I had started my first cycle after having Cohen (TMI? sorry...)but it was getting too heavy and gross. I went to my six week check up and after an exam and ultrasound, found out that my uterus was still extremely thick and there looked to be some blood or tissue stuck in the top of it. I had to go to the hospital (again) for emergency surgery. I was listed as a D&C, possible Uterine Artery Embolization, possible Hysterectomy. I have a very un-fun history of bleeding after a baby (after I had Brooklyn I hemorrhaged and spent a week in the ICU, needing 16 units of blood transfused) so they didn't know what all I would require.

The D&C went well. The doctor said he pulled out a lot of tissue, but we won't know what is was until next Monday during my follow up. We didn't have to do anything else and the only thing that hurt when I woke up from the general anesthesia was my throat from the breathing tube. I was discharged from the recovery room and Brian and I grabbed Carrabba's to-go and headed for the hotel (it was non refundable, and what better place to rest?). We still watched Harry Potter and had a nice, low key night just hanging out. I am now sick from the surgery... my sore throat never got better and turned into what I think is a sinus infection, but as far as the scary bleeding is concerned, I am doing much, much better. Leave it to us to make a quick trip to the hospital for surgery in the middle of our date night, lol :) What can we do but laugh?

Our sweet Coco bean is doing amazingly right now. She is on full feeds and they are decreasing the amount of time she takes her feedings over. Hopefully soon she will be able to try a bottle soon. She is over 3 lb 11 oz, now! I can't believe how big she is getting. You can definitely tell; her little cheeks are chunking up. She is less than one ounce away from doubling her birth weight and has become so kissable.

She was moved to the third floor, lower risk unit. She is allowed to wear clothes now and Mommy got her some cute new onesies from babies r us. Girls really are fun to shop for; it's been a while since I've had a baby girl and I guess I forgot. Everything is so precious. Cohen is still breathing on her own, too.

She had her first eye exam today. It is very common for preemies (90 % of micro preemies) to have something called ROP, which can cause them to be sight impaired or even blind. Cohen does have ROP and while it is still in stage 1- it is on the more severe end of stage one. She will be having weekly eye exams to make sure it isn't getting worse. If it does get worse, she will need treatments to try to lessen the chances of vision problems. Right now, there is a less than 20% chance that she will have serious vision issues. We will be praying for her little eyes to heal.

She should get her first "tub" (little tiny bucket) bath soon. I will be sure to get pictures and post them once we do. I should still only be 32 weeks pregnant, so it is truly fascinating to watch her grow and develop as if she were still in my womb. God has been glorified through my pregnancy and her little life, and there is truly nothing more that we could want. Thank you for continued prayers and support. We love you all.

Our Little Three Pound Porker

Coco bean will be six weeks old on Saturday. It's hard to believe. She has had a really great week. She now weighs 3 lbs 5 oz. 1500 grams; which is a big deal because now she gets to wear clothes! I only have one (adorable) preemie outfit, but I am going to stop by babies r us on my way home tonight to find her some more. 1500 grams also means we get to swaddle and hold her for 30 minutes, 2 times a day. I am holding her as I type this.

Cohen is now eating just over an ounce every 3 hours, which is the max for her size. She is tolerating it well so far, but we are still holding our breath a little because she has had tummy issues.

Her breathing has been great. She is on 2 liters with her nasal canula. That just means she isn't requiring that much help. She is doing all of her breathing on her own. Our little coco has quite a fondness for her fingers. She claws her face trying to get them in her mouth to suck. It's pretty funny. We gave her the paci tonight and she went to town on it.

The whole Day clan has had a good week so far. I've been happy with the amount of time I've been able to spend with her, and I think Brian is too. I have my 6 week apt tomorrow and Brian is taking the day off so we can relax. My in laws are taking the kids for the whole day AND night! We are going to hang out with Cohen and have a nice date and sleep an entire night, uninterrupted in a hotel ;). I cannot wait!

Thanks for keeping up with us. I'll post pictures of coco bean in her outfit as soon as she wears it. Have a great night!

-Chelce

A Whole Pound Bigger!

My sweet little coco bean weighs 2 lbs 15 oz today. She was 1 lb 14.7 oz at birth. Putting on a whole pound makes quite a difference for our little peanut. I'm up here with her now, just staring at her. She is doing pretty well; a few ups and down, which are to be expected. She is on a nasal canula right now. I love the canula because her little face doesn't get all swollen. She really is getting more beautiful everyday.

I'm struggling right now with the amount of time I am able to be up here. Brian came last night after work, so I haven't seen her since Tuesday morning. I am struggling with mom guilt. I wish I could be here every moment of every day, but I have three more beautiful children at home that I take have to/ want to take care of, too. I can really use prayers for that if you are up for it. I know Brian had a tough time, too. We can both use prayers :)

Cohen is tolerating her feeds pretty well. She had a little blood in her tummy yesterday, but they think it was because the feeding tube was irritating the lining of her stomach. She has been ok since then. She also got her fifth blood transfusion today. I'm hoping we will be past needing them pretty soon. Brian was able to hold her this past weekend. It was very special. I got some great pictures, but they are on the computer at home. I will post them soon. Coco bean is also a MONTH old! It is hard to even believe. She's still got a couple of months here, but I am starting to get excited about her being home with us.

If you could also be in prayer for a friend of mine-- her baby girl was born weighing 1 lb 10 oz, just two weeks after Cohen. We go to church together and her sweet girl is just down the hall from Coco. Baby Chloe is also doing well, but can definitely still use the prayers. Thanks again and I will update again, soon :)

Chelce

Wires

I've had the song "Wires" by Athlete stuck in my head for a few days. I downloaded it to my itunes a few years ago when it was the theme music of one of those gory discovery health shows I like. I just learned a few days ago that the song was written by the lead singer who had a baby in the NICU. It probably isn't everyone's taste, but I like it.

Cohen is doing great. I am sitting here looking at her right now, with all of her wires connected to her. She is getting cuter. I feel like she is starting to look like a Day kid. She is breathing completely on her own now. She is still on the CPAP, but she is doing well on it.

Her enormous CPAP

More good news: her infection seems to be gone. They finished one antibiotic today and will be finishing another in a couple of days. They also started her feeds today; I am most nervous about this. She has had a tough time with her feeds (blood in bowel movements and swollen intestines), we need lots of prayers specifically for this. They are going to move very slowly this time. She is getting .9 ml's every three hours to begin, it will continue to be increased over time if she does well.

This picture was taken when they were readjusting her CPAP- you can see her sweet face

I was able to kangaroo with her, again, yesterday. It is so nice feeling her warmth against my chest. It helps me to feel like her mom. What's crazy to me is that her little movements remind me of when she was inside my belly. She will give a little kick or a push and I will remember that she should still be inside of me, 30 weeks along today growing happily. 

The other day I got a video of her sucking on a preemie pacifier for the first time. You get a pretty good gauge for her size from the video

A quick detour from Coco bean. We took the kids trick or treating and they had a ton of fun. Here are some pictures. We have a Princess Leia, a Yoda and a transformer. 

Hope you all had a Happy Halloween and thank you for keeping up with us!

Cohen is so busy.

I'm so overjoyed to see my daughter today!  It's still a generally uncomfortable feeling to have to make a 25 minute drive to a hospital to see your own daughter, but this is how it goes.  The last time I was up here was Sunday and Coco was still using the ventilator.  So, this morning is the first time I've seen her with the nasal canula.  I must say, I prefer seeing her use this than any other form of oxygen assistance - because I can see her beautiful face more clearly.  It's also great because the nasal canula is the mechanism that uses the least amount of support for breathing that she can get, which means she is doing really well breathing on her own.


Last night, Coco had her second PICC line inserted (peripherally inserted central catheter). This is superior to using an I.V. because the I.V. line has to be replaced constantly, whereas the PICC line can stay much longer.  Since she was taken off her feedings as a preventative measure, she is receiving nutrients intravenously and the PICC line is super to this end.

PICC line visible here

The doctor greeted me this morning and let me know that Cohen is doing "really well."  She had a brief apnea episode last night but the doctor feels like it was more a response to the sedation she was given for the PICC line procedure than her simply forgetting to breath.  They gave her another drug to reverse the relaxing sensation of the sedation to get her breathing again and it seems to have worked.  


When I was sitting here with her this morning her oxygen levels did fall the most I've ever seen (from 83 to 33 in a matter of seconds when it typically fluctuates no more than 10 numbers), and the respiratory tech had to come in and assess her.  As it turns out, her canula had a plug in it and she needed to have her mouth suctioned and her nostrils flushed.  That seems to have helped significantly, although it wasn't pleasant for Dad to watch.  Coco bean did not appreciate all of the activity.

Nurses replacing Cohen's canula

The other good news from the Doctor this morning was that Cohen's spinal fluid culture and blood cultures are still negative.  So, she does NOT have meningitis and she seems to be responding very well to how they've treated her thus far.  At this point, infections happen - or so we're told.  We'd obviously prefer for those infections to have a minimal effect on her at worst and avoid the more severe infections that can happen (NEC, meningitis, etc.).  So far, we've been blessed beyond measure with her progress and are so grateful for God's grace with our precious Cohen.   

I'm really excited to be back up here with Chelce, so we can spend more time with Coco bean together.  Please continue to pray for Cohen's development, the doctors, nurses and caregivers and our family.  A HUGE "Thank you" to the great network of people who have kept us in your prayers over the last few months.  We could not do this without so much support.

Love you all.

Brian 

PS - As I'm finishing this blog entry, the Doctor came in and let me know they're going to put Cohen back on the CPAP (continuous positive airway pressure).  She is working a little too hard to breathe right now so they're going to give her a little break.  And so goes life in the NICU.  You can't finish a blog entry before something changes : )

Chillin on the Vent

Baby Cohen has had an uneventful day. She is just chillin on the vent. It is still breathing for her, but she is trying to take a few breaths. She is also breathing room air, which is 21% oxygen; a good thing. She is on day two of at least seven for her antibiotics. This morning her x-ray looked better; her bowels are less swollen and there are still no signs of gangrene or perforations in her intestines. She did have to get another blood transfusion today; this makes number three. They seem to make her feel a lot better, so I actually feel good about them. She is so small that they have to replace the blood they take out to use for testing.

We can't believe out of all four kids, our sweet 26 weeker has the most hair! She may have come out looking like Rapunzel at the rate is was growing :) While yesterday was a hard day, we still had joyful moments. Brian was able to check her temperature, change her diaper and even hold her in her isolate so the nurses could change her bed. He was so happy and I got some great pictures. 

My favorite from the night: Daddy holding his girl in the isolate while looking at her

We still need your prayers. Thank you for loving and supporting us :)

Downhill on the NICU Rollercoaster

We found out last night that Cohen was having bouts of apnea and that there was more blood in her stool. Her heart rate was also decreasing. They did blood work and X-rays. 

We received a call from the NICU at 5 am telling us that Cohen had to be put back on the ventilator. They decided to start antibiotics because they suspected that she had an infection. 

Brian and I arrived at the hospital today and spoke with the doctor. Cohen is completely apnic right now, which means the vent is doing all of her breathing for her. She is too tired and feeling too poorly to breathe. Additionally, her X-rays showed that she has a lot of gas in her intestines, but thankfully there has been no perforation at this point. Her bloodwork did show that she has an infection. They are going to be conservative with her treatment and are going to treat her as though she does have Necrotizing Entercolitis (NEC). Luckily, her bowels are not dying right now-- this is what happens with NEC. They will completely stop her feedings and put a PIC line (long term iv) back in for at least 7-10 days. She will be on very strong antibiotics for this timeframe. The doctor feels confident that this will make her feel better. 

Last night was my first super rough night since I've been home. This is so scary at times. People have told us that this NICU journey is 3 steps forward, 2 steps back; but man is it hard bring in the throes of it. 

Please keep praying for our girl. Pray that she feels good enough to start breathing on her own, again. Pray that her intestines will heal- as she will need those her whole life and pray that our girl can grow big and strong enough to come home, join out family, and love God. We appreciate you all. 

Chelce

Sent from my iPhone

2 1/2 Weeks Later

Cohen is 18 days old today. It feels like we just had her yesterday, but also feels like she has been a part of our lives from the beginning. We were told if she made it through the first 7-10 days in "reasonable condition" that she had a good chance of surviving. She was on a ventilator for the first week and a half. She was extubated twice during that time; first, because they thought she was doing well enough and second because our little booger extubated herself. Both times she needed to go back on the vent. She was finally extubated for good about a week ago. She is using a nasal CPAP (Continuous Positive Airway Pressure) right now. She is breathing room air, which is 21% oxygen, but just needs a little extra pressure to fill her lungs. Preemies lungs tend to want to stick together since they are so underdeveloped. Here is her CPAP. It is actually scarier looking than the ventilator, but it means she is progressing!

She was tipping the scales at 2 lb. 4 oz this morning. The doctor let me know that she may lose a couple of ounces in the next few days do to some feeding readjustments. Cohen gave us our first scare two days ago. We hate to see the NICU calling anytime other than their routine morning call; and we got a call a couple of afternoons ago letting us know that Cohen had blood in her stool. This is never a good sign, but in Preemies, it can be a sign of a very dangerous infection known as NEC. She had been tolerating her feeds very well up until this point. They stopped the feedings completely and had to put an IV back in her little arm to give her nutrients. They did 3-4 x-rays over the course of two days and found nothing significant at all. She restarted feeds yesterday with a different formula (mixed with my --almost-non-existent-- breast-milk). They are very slowly progressing her feeds, but she is doing great so far. She has had more bowel movements and no blood! The doctor said sometimes that happens and there is really no reason. She must have strained to hard:) I am cautiously optimistic about it. It seems like NEC is not an issue right now, but it is still scary to me.

Cohen and I have been able to Kangaroo twice (that is a NICU term for holding her skin to skin for a set amount of time). Studies have shown babies how Kangaroo tend to do better in every aspect of getting better: put on weight faster, eat better, interact quicker. We are hoping Brian will be able to do it tomorrow. Here is a picture of us finishing our Kangaroo Care. This helps to show her size...

This too-- Daddy's wedding band on my chest next to her hand. If you have a ring, look at it. Her hand is barely bigger.

The nurses already love her. They all say she is "feisty". She cries and moves around constantly. We have a video of her crying while the nurse took her temperature. She hates being messed with. I don't blame her. 

I am heading up to the hospital now to visit. I will update again in a couple of days. Thank you for prayers. We still need them!