Breastmilk Bound

Caleigh getting her first bottle

On the way to the hospital yesterday (after the poo heard round the world) the doctor called and told us that they would be starting Caleigh on breastmilk! Better yet......try a bottle!!! They were skipping the pedialyte and going straight to milk and because of her size they were going to see how she does with a bottle. So Eric and I get to the hospital, and our nurse says that we can introduce the breast to Caleigh first.....see how she does, and then finish with the bottle!!! Wow, what a day! So we had our little introduction and she knew exactly what to do, but at her gestational age Caleigh doesn't have the jaw coordination to keep sucking. We will just keep practicing. So on to the bottle we went. Needless to say it didn't workout too well. Maybe she was tired after the intro to breastfeeding, maybe not, but there are rules to bottlefeeding she wasn't aware of. All babies need to suck, swallow, breath and repeat. Caleigh's first feeding went a little like this.....suck, suck, suck, swallow, swallow, swallow........hmmmm no breathing! All of her stats dropped and bottle time was over. This is a learned thing and has a lot to do with coordination as well. So we will keep practicing once or twice a week until she is ready. I am so grateful to have our first experiences like this in the NICU because all the nurses are there to help if anything goes wrong and they have the equipment to tell us if something isn't going well. I probably would have freaked out if I was at home alone, but I was calm because I knew they would take care of her. Caleigh is still getting feeds even though she can't take the bottle yet. They still have her feeding tube and she is getting 5ml every 3 hrs (about a teaspoon). She seems to be tolerating her feeds well and she hasn't stopped the dirty diapers yet! It was a long and exhausting day......Caleigh was tired, mommy & daddy were tired. I'm pretty sure we will be 'tired' for the next 18 to 25 years!

We have POO!

Caleigh gets to ride over to Cooks in her 'To Go' box

Today Caleigh went to Cooks twice. The first time was 11 am to start the contrast study. It took a long time but the radiologist let Eric and I stay in the room with her while they did the study. Things weren't moving very fast through her system so they set us back to Harris to wait and the docs did 2 x-rays while she was resting in her own bed. Then the radiologist called us back over to Cooks to do a 'live view' again. She couldn't really tell any differences so she sent us back to Harris so Caleigh could be in her own bed. They scheduled x-rays at 8pm, 2am & 6am this morning to watch things. They are basically watching the path that the contrast 'dye', which is water soluble, takes. We want to watch it go all the way out! During and after the study Caleigh was grunting and pushing like she was working on something. Very exciting! Eric and I left this evening in wait mode, but to our surprise when we called to check on her; the nurse told us that Caleigh had her first stool!!!!!!! We are so excited!!!! Caleigh isn't out of the woods yet and the docs still want to look for narrowings, but it's a start and after 6 wks of no poo we are jumping for joy. Hopefully there will be many more dirty diapers to come!

6wks & 4lbs

Caleigh smiling with Pop's hand shielding her eyes from the light

Today Caleigh is 6 wks old and a chunky 4 pounds! Today Caleigh was moved to room 3a where she will likely stay until all of her tummy trouble is resolved. Tomorrow Caleigh will go to Cooks for another contrast study. This time they will do an upper GI through her feeding tube unlike last time when they went in using an enema. The doctors are looking for blockages again and if she has one it will likely be in the same spot as last time (where the small intestine meets the large intestine). If she does has a blockage, called a stricture, then Caleigh will have to go in for her 6th surgery. We are praying that her intestines are just moving slow after all the other surgeries and that it just needs more time to 'wake up'. I will update tomorrow evening on any changes or results. Please keep little Caleigh in your prayers.

Lady in Waiting

Caleigh with her new hair bow. Caleigh's favorite nurse, Ashley, made her a hair bow to go with the halloween sweater she bought her (complete outfit pictures coming soon) Soooo Cute!

Today Caleigh weighs a remarkable 3 lbs 15.7 oz. We can't believe she is about to double her birth weight. Tomorrow she will be 6 wks old and it is just amazing how much she has gone through and accomplished in such a short time. In actuality, Caleigh's gestational age is only 35 wks which makes everything she (and all other preemies) accomplish wonderfully amazing! Caleigh is still on the TPN nutrition and fats. The doctors haven't started any pedialyte or milk yet. We are still waiting on her bowels to show that they are ready. They are slow moving but mine would be slow too after 5 surgeries! We are waiting on her stomach acid to turn clear (right now it is a light green color) and lessen in amount or wait for a bowel movement. Caleigh had to go back into the temperature controlled bed. She just wasn't holding her temp being swaddled and clothed in room air. The docs just seem to think it is immaturity and they will try again at a later time. Which leads to the title 'Lady in Waiting' cause that is what we do best with miss Caleigh.

Mommy went for her 6 wk check up today and everything looks great! Yesterday, Eric and I loaded up a lot of breastmilk to donate to the Mother's Milk Bank of North Texas. We are also sending what is at the hospital over to the bank as well. I had so much milk and the deep freeze was full; what better way to help other babies while Caleigh isn't needing the milk. When she does start taking milk, the docs will give her my freshest milk so the old milk will just sit there anyways, and I will still be pumping so eventually the old stuff would have to go to waste. My milk will be labeled for premature babies because my milk came in prematurely at 28 wks. I didn't know there was a difference, but I guess there is. I put a link to the milk bank in the links section of the blog. I know that you can link your albertsons, kroger and tom thumb rewards card to the milk bank and a portion of your purchase goes to them. One of Caleigh's nurses and a doctor at the NICU started the milk bank and now milk is shipped all over the country. Can you tell I am excited to be helping those sweet little babies grow :-)

Hiccups and Smiles

Caleigh had the hiccups and started smiling like crazy! Bad video quality but you can definitely see the smiles! Nothing has changed.....we are still waiting as of this morning. Much Love, The Grays

A tree for Caleigh

Yesterday Eric and I went out to our land to plant a tree for Caleigh. For those that didn't know, we are the proud owners of 20 acres in between Jacksboro and Bryson. It's absolutely beautiful up there and very quiet! This is our drive way that goes through the middle of the land.

Eric planting Caleigh's tree. Eric loves to garden and work in the yard, something he hasn't been able to do lately. This was a great break from the hospital.

I haven't been able to photograph much lately either (not counting our little one). So this was a great break for me as well. I love the light on the tree. Amazing, just like our sweet Caleigh.

So here it is.....Caleigh's first tree! We decided on a Chinkapin Oak.
It's a native Texas tree that is hardy enough to be left out in the country to fend for itself.

We wrapped the tree with rocks from the land and engraved Caleigh's name and the date we planted the tree.

Another photo moment for mommy!
Who knew weeds could be so fun!

And then of course we ended the day by going to visit Caleigh.

She is so alert and happy right now. She is watching daddy really close!

Back in bed and sleeping like a champ!

So the doctors gave Caleigh about 4 suppositories over a 24 hr period and not a single bowel movement yet. We aren't sure what to think and it really depends on the doctor or surgeon you talk to because they all have different methods and time lines that they think the baby should follow. So pretty much we are still waiting. I do know that we don't want to rush to feed her if she isn't ready so waiting seems to be the answer. The doc has switched to alternating the Cpap on for 4 hrs and off for 8 hrs. Caleigh loves the off time, but the on time gives her the chance to rest her lungs. She is doing amazing and her stats are wonderful while off the machine. Today Caleigh weighs 3lbs 10oz so we don't have any problems in the weight gaining department. Poo and feedings coming as soon as Caleigh is ready!

Moving Along

Today Daddy got to hold Caleigh for the first time since her last surgery! Look at that no more Cpap on her nose!! Yea! The doctors are doing the 4 hours on, 4 hours off thing to see if Caleigh can handle it and let me tell you ...... she is doing amazing. So hopefully in a couple of days she won't need it at all.

Caleigh loves holding Daddy's finger :-) Look at the little neck rolls! What a chunk :-) Caleigh weighs 3 lbs. 8 oz. today. This means that she can start wearing clothes with easy access buttons and she no longer needs the isolette to help control her temperature. Caleigh has been holding her own temperature for 2 days now and doing great. Soon the doctors will move her to an open bed!! P.S. we are totally set with preemie clothes ...... I think Caleigh will be the most stylish preemie in the NICU :-)

And finally, check out the little grin on our sweet princess! Caleigh is happy again and showing it. While Caleigh was holding Daddy, we talked to her and made her smile over and over again! It's great to know that she is feeling better. Check back for updates soon...... I think we are about to start feedings again. Were are a little nervous, but Eric and I, plus all the nurses have been giving Caleigh pep talks about dirty diapers and lots of breastmilk!

Bounce Back Baby

Wow, Caleigh is just beating all the odds this week! Eric and I called to check on Caleigh yesterday before coming to visit, and the nurse told us that the doctor went ahead and just moved her back to the Cpap machine instead of the conventional vent. We were just thrilled! She was doing so well that they didn't see any reason to leave that yucky old tube in her throat. She still doesn't like the prongs in her nose, and she'll let you know all about it when she starts fussing, but this is a huge step. Growing by leaps and bounds. She weighs 3lbs 6.6oz and she is 16 inches long today. The docs think that while the vent was doing all the work and Caleigh was sleeping after surgery; her little body didn't have to work so hard and it took that time to do some important growing. Practically all her swelling is gone and she should start getting heavier from here on out. I changed Caleigh's diaper today and there was a tiny smear of mucus in it which is a great sign of things starting to work!!! I really need to invent a poo dance :-) The doctors probably won't start pedialyte again for another 4 or 5 days, but they think things are looking great.

Caleigh holding mommy again! Yep, I got to hold our baby girl today!
It had been over a week since I held her last and I was getting awfully cranky not being able too.
I'm doing a lot better. I'm on my 4th day of iron supplements and I feel like I could run a marathon again! Just kidding maybe just a 5k :-) but I do have more energy!

won't let no surgery hold us down

Caleigh 4 days post surgery

Today Caleigh has really made some baby steps toward the right direction. The doctors continue to wean her vent settings and she will be on the regular ventilator in about a day or so (once the swelling has gone down enough) and then once they wean her from that she will be put back on the Cpap. You can see that she is breathing around the vent and that is still really reassuring. Caleigh's swelling has gone down a lot! She still needs to lose quite a bit, but as you can tell by the picture she looks a lot better. She was a lot more active today, maybe a little too active! She kept struggling with the tubes in her throat and fighting against them! I wouldn't want them either. So nurse Linda gave her some medicine to calm her down and it worked great. Our little fighter is back :-) Caleigh's urine output is wonderful and the doctors are slowly weaning her off the steroids and diuretics. Little baby steps for such a big girl! As for me, well......, mommy Gray seems to be a bit anemic and in need of some iron supplements. Dizzy, weak and tired seem to be my middle names lately so hopefully I will be feeling a little better soon and possibly have more energy! Hope everyone has a great weekend! Much Love

3 Days After Surgery

Caleigh is doing a little bit better today. The doctors have weaned her ventilator settings down quite a lot and she is on room oxygen now. She doesn't need her blood pressure medicine anymore and she is urinating a lot. Hopefully, with all of these changes she will be able to be taken off of the ventilator and moved back to the Cpap by late this weekend. Caleigh is still terribly swollen and the doctors think that the swelling will subside by late this weekend as well. Everyone seems to think that she has taken a turn for the better. Today she was opening her eyes and moving around even though the nurses were giving her sedation. Caleigh was being feisty and stubborn just like she always is! This was a amazing sight and very reassuring.

Thank you so much to everyone that wrote us, left us messages, and have been keeping our family in your thoughts and prayers. Everyone has been asking what they can do to help and the best gift for Caleigh is thoughts and prayers. They are the most important right now.

4 weeks old

This is Caleigh the day before she had her 5th surgery.

Caleigh today. Day 2 after surgery.

Caleigh has been really sick the past 2 days since her surgery. She has gained about a pound since last night. She is almost 4 lbs. Her little body is very swollen and she had just began to urinate this afternoon. The doctors had to switch Caleigh to an osculating ventilator that blows short puffs of air into her lungs. The swelling has caused fluid to surround her lungs making it hard for her to breath. Her abdomen is pushing up on her diaphragm as well. The ventilator is doing all of the work for her right now. She has never really needed help breathing so this is very hard for us to deal with. There is a lot of other technical things going on as well that I won't bore you with, but all in all she is having a really tough time getting over this last surgery. The doctors are keeping her comfortable with pain medicine and that we are grateful for. One little body shouldn't go through what she has had to endure.

Please pray for Caleigh to get through her struggles. She needs to lose the extra fluid and stabilize everywhere else before they can see if her bowels will start working again. I pray that this is the last surgery for our sweet Caleigh. With each day it is harder and harder for us emotionally to see our little girl in so much pain when just a few days earlier she was smiling and interacting with us. Thank you for all your thoughts and prayers.

5th Surgery & only 27 Days Old

Today Caleigh went in for the MRI/x-ray of her abdominal area. They call it a contrast study and it involves a 'dye' of sorts that is injected through an enema. As the dye goes in, the technician takes several pics and then the doctor reviews them. As they were doing this procedure, the 'dye', which is water soluble, started to leak out of a small hole in Caleigh's small intestine. So about 2 hours later we were meeting with the surgeon and neo-natalogist and an hour later we were back at Cooks for surgery.
The surgeon came and met with Eric and I, and he explained that during the enema, there was a narrowing of intestines where the fluid couldn't get past it and it caused a small hole. This is also why she hasn't had a bowel movement yet either. This narrowing part of intestines had formed scar tissue from the reconnect surgery and basically closed itself up. They removed all the stool that was waiting to be passed. So Caleigh is clean as a whistle and ready to start eating again! The surgeon seemed to think that he got everything, but he did have to remove the centimeter of bowel that was scar tissue. All together she has had about 11 cm of bowel removed. Caleigh is back on the ventilator because of surgery and we expect her to stay on it for a few more days until she becomes more stable. They will probably try milk again in about 2 weeks or so. We just have to start over again and wait for her to be ready. This morning she weighed 2 lbs. 15 oz. Which means we could have a 3 pounder before too long!

(Update on Baby Jenny) Her swelling has been going down with each day and the doctors have switched her to a lesser ventilator (the same one Caleigh is on now) She seems to be stable, but they still don't know the cause of her swelling.

Thank you to everyone that came out and got wet for our babyshower! Man..... was it raining! But, I love the rain! We have tons of laundry and organizing to do and I know that will keep us super busy! I will try to post pictures from the shower soon.

Thanks again, Much Love!

A bit too much

Well, we started celebrating a little too soon. We were prepared for the ups and downs of Gastroschisis, but it's hard not to get your hopes up when she is doing so good and then be completely disappointed when we take a step back. Caleigh couldn't tolerate the milk so they switched her back to pedialyte yesterday. She also hasn't had a bowel movement. They have tried suppositories about 5 times over the last couple of days and yesterday they gave her 2 enemas with no results. They did an abdominal x-ray yesterday and everything looked normal for her. Dr. Vaughn is supposed to come see Caleigh this morning and if the enemas didn't work, which they didn't, then he is going to order an MRI to see if there are any blockages or kinks in her intestines. I pray that there aren't any blockages, but things aren't looking up yet. Blockages are very common with Gastro babies. If there is a block, Dr. Vaughn will have to do surgery again to remove the problem. Caleigh is just now healed from the last surgery (2 wks ago). So it will be like starting over again. I don't think I have prayed for a bowel movement so much in my life!

Caleigh is still on the bubble Cpap and the doctors think that they will try her off of it in a few days. Eventually she will be strong enough to completely breath on her own and they won't have to go back and forth with the machine.

Mommy's Milk

So yesterday was a big day and today was pretty big too! Caleigh started tube feedings of breastmilk. They are called continuous feeds because she gets 2ml every hour 24 hrs a day. She seems to be doing ok, but she is extremely uncomfortable. Because she is continuously fed; there is no time to burp or release the air. So she gets a lot of air in her tummy and it made her cry a lot today. It breaks my heart to see her in pain, but we knew all along that the feeding process would be long and frustrating. Hopefully it gets better soon. The nurses can pull out the air through the tube to release a lot of pressure and that seems to help.
Caleigh was also misbehaving with her breathing this morning so the doctor put her back on the Cpap. This one has nasal prongs and she does not like it one bit! Lots of frowning going on today ;-( The Cpap will keep her air sacs open by pushing air into her lungs. It's room air though, so she isn't needing oxygen assistance.

Also, I wanted all you prayer warriors out there to pray for a set of twins that are in the NICU with Caleigh. Jenny and Emma were born at 24 weeks and each were about a pound and a half. Emma is doing well, but having trouble gaining weight. And Jenny is having a fluid problem and the doctors don't know why she is swelling so bad. She is on the ventilator because she is too fragile and they almost lost her earlier this week. Jenny and Emma have 3 other siblings at home waiting for them. They have been in the NICU for about a month and a half. If everyone could add them to their prayers, we would really appreciate it.

Again, thanks for all of the comments and wonderful prayers. When I hold Caleigh, I talk to her and tell her about all the people that love her and pray for her daily. It makes a huge impact. Thanks again!

Such a big girl today!

Weighing in at 2lbs 9 oz, and 3 wks old, Caleigh had a big day today! Dr. Grubbs (neonatologist) has taken her off of the breathing machine (Cpap) completely. It's close by just in case she needs it, but for now no more elephant face mask. Caleigh is very excited :-) And equally huge, Dr. Vaughn (surgeon) has started tube feedings of pedialyte today! Big girl food! We are waiting to see how her bowels take the pedialyte and then in a few days they will start mommies breastmilk through the tube. As far as the bloody stool goes.....the nurses and Dr. Grubbs aren't concerned and think that the suppository caused the irritation. When Caleigh starts milk we will know more about how her intestines are doing. She is all smiles when mommy talks to her. It is so sweet that she is so happy to hear our voices!

Labor Day Photos

Eyes open and smiling every now and then. It just melts our hearts!

Today was picture day! Look how big that binky is!

Snuggling her bunny while napping and wearing the Cpap breathing machine.

Here's Caleigh with her first hair bow....how cute is she?

Awwwww......family picture.

Here's mommy doing some kangaroo care.
Caleigh's stats are great when we get to hold her and mommy is happy too!

Caleigh Holding Mommy

Daddy watching Caleigh sleep in her hotel suite! She already has him wrapped around her finger.

We are still waiting on Caleigh to start feeds. This morning the nurse (Caleigh's favorite, Ashley) gave Caleigh a suppository to help her have a bowel movement for the first time. She had a small one, but unfortunately there was blood in her stool. The doctors want to watch her for awhile to see if anything else might happen. We are a little worried about the blood and have been praying it is just a fluke thing. If all goes well they might try tube feedings some time this week. As far as breathing machines go....the vent is gone (yea!!) and the cpap machine is being rotated on for 4 hrs and off for 8 hrs. So Caleigh is breathing on her own most of the time and she is doing great! I'm sure the docs will have her off of the cpap machine by the end of this week.

Yep, we finally did it! This is our new breast milk freezer! Later known as the meat freezer, says Eric.

This is how much milk we had to put in it. No more room in the regular freezer. This is just 2 wks!
Plus there is this much stored at the hospital! I feel like a milk factory!

Daddy gets to go to the dentist tomorrow and get his very first root canal! Wish us luck!
Hope everyone had a great Labor Day!