Welcome to the Jungle

I feel like "Welcome to the Jungle" should be the Moran family theme song from now on because I'm pretty sure that is what my life is going to be like everyday from now on.
Jeff, Palmer, and I picked up The Queen B tonight around 5. Ashlyn Kay stayed with Laura & Ashley & big cat (ha) while we were taking care of business. After we gathered all of Blakely's belongings and got our million appointments set we were off. So here Jeff and I set out with the twins in tow and me sitting in between them. Not 5 minutes in Palmer starting crying because she had a bad diaper. Here goes Blake crying to make her feel better. So we stopped at the gas station, changed Palmers diaper, and off we were again. We picked up Ashlyn Kay and headed to the apartment. After taking a half a hour-not really-to unload three kids, their crap, and the stuff from the hospital...it began.
Jeff started to cook dinner and Palmer started to cry because she was hungry and so while Jeff was working on her bottle ashlyn kay was shaking keys in front of her face saying "hush baby sista, hush". Started feeding Palmer and here went Blake. So I started to feed Blake and then AK starts crying, "mac and teese, mac and teese". Okay, so now I am holding and feeding both twins, J is working on our dinner, plus mac and teese for big girl. I think by the time it was all over my shoulders were permanently stuck around my neck which is sure where they will be for the next oh lets say ever!
It is just so comical! We are so thrilled to have Blake home with us though. It is all becoming bittersweet and very real what has happened and what will continue to happen.
When you leave the NICU you are given a discharge summary which summarizes your child's stay. Upon reading what all happened the night she was born I was almost in tears. I never realized actually how terrible it was. She was born with no heart beat and they brought her back to life then lost her again and then brought her back...and here we were sitting in our SUV driving home. Oh Lord how much I love you for saving my angel!
Taking care of her bottom tonight was and will always be a constant reminder of her journey and our future journey to come.
I can't wait for Thursday but am sad at the thought of closing a very important chapter in my life. I also very sad to be leaving the Bradley family. They have been our saving grace and I will be indebted to their kindness and generosity forever. I love them so much!
Keep continuing to pray for a safe trip for us home and the ability to constantly give it to God.

AMAZING NEWS!

Everyday we get a phone call from the resident to update us on Blake's progress and other information we need to know. So like normal I answer and she goes over anything that has happened within the last 24 hours. She informed us that Blake took 98% of her feeds via the bottle. So they decided to remove her NG feeding tube since she was doing so good with her bottles. So that was great news! They had indicated we would have to go home with the feeding tube but thankfully she loves to eat.
On Monday she will be 12 days post op from her last surgery. Originally they were feeling the need to remove the sutures 14 days post op but this morning in rounds the surgeons said Monday would be fine because the sutures were ready. The resident told us that since she was eating so well, gaining weight, and getting her sutures out on Monday that she could go HOME! Hooray! So on Monday or Tuesday depending on us the Queen will be making her exit from Children's RCNIC. This is the most exciting news ever. This means we can leave on Thursday or Friday to head home to Bama. I am literally about to burst with excitement.
I just can't believe our journey here is coming to a end and we are finally moving on the next stage. It will be 7 weeks on Monday since the twins were born. I just can't believe how far we have come and in such a short amount of time. The doctors each time are amazed by how well she does with each task they give her. Meme says well of course she is doing good, God answers prayers doesn't he?! Our God is a awesome God for sure!
This time next week I will be sitting at my house looking at my three angels all together. What a blessing.
Lets all keep praying our journey continues to be positive!

Blakely & Palmer "friends for life"

The visit went great today! The snuggled a little and then fell asleep. Blake seemed to really enjoy herself and she calmed down so much while Palmer was there beside her.

Things are still looking up for both of them and Blake is doing great. She is now taking every feed, the full amount, by bottle. Coming home soon is so going to happen!

Funny Story

Last night Jeff, AK, Palmer, & I went to the Bradley's home to have dinner. After dinner we stayed a while to chat then the girls started to fall apart a little so we knew it was time to go. It was time for Palmer to eat as well. The Bradleys home is only a couple of minutes from our apartment so Jeff and I thought it would be okay for Palmer to hold off until we got home. Were we wrong! We buckeled the girls in and headed out of the drive. Palmer started crying or screaming because she was hungry then here chimed in Big Sis because we had left her "cup cup" and her "buh"! So AK is screaming "cup cup" over and over and Palmer is shrieking with hunger. Oh and we had also taken our trash with us to drop it off at the dumpster but of course we forgot to drop it off. So screaming kids and a car that smelled of poop! AMAZING! All we could do was laugh hysterically. Then Jeff said, "Just think if Blake was back there"! Ahhh!

A official meet & greet

I am just so stinkin excited because today will be the official meet and greet for Palmer & Blakely. Now yes, they did share a space for 31 weeks but have not yet actually touched each other. I haven't been able to hold both my girls at the same time nor even see them together. I just can't wait! My hope is that they just cuddle up together as if they have never been apart. Knowing my kids they will not even interact at all and just lay there like two babies-ha! I hope not. We will see I guess.

Palmer is obviously feeling better and cold free. Bless her little soul though I think she has some reflux but that is not shocking to our family. She is getting so big and is just as adorable as ever. Blake was doing great when I was there yesterday. She is now allowed to take a bottle every feeding. They give her 40 mL and allow her to take as much as she likes then they put the rest through her NG tube over 2 hours. She took 10 mL at the feeding I was there for and did really well. The OT and Speech Therapist will continue to work with her on that. She tends to want to suck it down quickly. If any of you know Jeff and how he eats this is not shocking one bit.

The discharge nurse dropped by again yesterday so we could discuss the possible discharge date. First of all I can't believe I am even getting to discuss discharge. I honestly thought this day would never come. On Wednesday she will have her sutures removed. From a surgical standpoint she is ready to leave, but from a feeding standpoint we will have to see. We hope by Wednesday she will be taking all of her feedings by either bottle or NG tube. A NG tube is the tube in her nose where they hook up a syringe and pour the formula in there and let gravity pull it down. So as long as she is doing good with feeds Friday is our discharge date. We will stay in Ohio for several days to make sure nothing is going to happen with her wound. Then on Monday or Tuesday we will head to Birmingham with a stop in Nashville. Blake still isn't able to put alot of pressure on her wound so riding on her hiney for such a long time would be too much. So hopefully October 4th or 5th we will be making our way to Alabama!

I just can't believe this day is almost here. Continue your prayers for her good progress!

another day

Well, Palmer woke up this morning sounding really congested and snotty. Jeff & I had planned on taking her to see Blakely this morning for their reunion. We were so excited! Just being on the safe side I thought it would be a good idea to take Palmer to the pediatrician to make sure her congestion wasn't a cold or something. Well wouldn't you believe it was! I am so upset. How did she get a cold? So not only does she have a cold which could always turn into RSV she didn't get to see Blake again. Can you say disappointing.
Then once I got to the hospital I found out that Blake threw up everything she ate yesterday. Whoever decided to start her feeds pushed a little too hard and she wasn't ready for all they were giving her. So she didn't do well and she has lost a fair amount of weight. Which was upsetting.
So her plan was changed again and they are going to start much slower like Jeff & I suggested. She was 5 pounds 2 ounces on Saturday and today she was 4 pounds 9 ounces. Ugh. Oh the upside everyone has been asking how much Palmer weighed. She is a whopping 6 pounds 4 ounces. Can you believe it?
We are hoping both girls are better tomorrow.

B Pod here we come

So today was a big day for the Queen! After surgery rounds this morning she was given the A-Okay for feeds. Hooray. We were knocking on the door of 3 weeks without food, poor gal. But that has all changed. The nurse called and said they decided to go straight for the bottle and no feeding tube. Jeff and I thought it was a little premature, but they are the physicians, not us. I arrived just in time for her first bottle feeding. They want her to take a minimum of 35 mils a feeding every 3 hours. She did pretty well with her bottle the first go round. She only took 25 mils, but the nurse said that was okay. About a hour after she ate she had a drop in heart rate, but I was told it was probably reflux which we know she has. So the nurse said she would see how she did at her following feeding. She was promised to be moving to B pod which is the private room so that Palmer can come and visit.
I called back tonight to see how things went and to see if she got moved. She did get moved, hooray! I am sad to see G pod go, but I am happy that Palmer will be able to come and visit. I just feel strongly that the girls need to be together. The nurse informed that her feeding went okay, but she did have some trouble breathing while she ate, so they went ahead and put in a feeding tube to start her off with. I was sort of happy about this. I really felt like they were throwing way too much at her way too fast. I don't want to overwhelm her, taking it slow is much better in my opinion. Hopefully she can work up with her feeds and then start back with the bottle again in a couple of days.
I also got to change her diaper today. I have only changed about 3 so far for her. Her bottom looked well and wasn't read and swollen so that is good. Her incision seems to be healing really well. It is still a little strange because her little hiney is so different from well babies. I am sure we will get used to it eventually.
I am as always appreciative of your prayers and need them to continue that all things keep going up!
Tomorrow after my 6 week post pardum check Jeff and I are planning to take Palmer to visit her sister! Hope she likes her as much as Ashlyn Kay.

Looking up

Blake is recovering well from surgery, thank goodness. Yesterday they went ahead and moved her back to her crib from the warmer. After rounds this morning the surgeons decided she could move off of her stomach and lay whichever way she wants. She seemed happy about that. Blake was going to be moved to "B" pod which is where the private rooms are. I was really excited because once she gets moved Palmer can come to the NICU. I am dying to get her there and get the two girls together for the first time since August 9th. A community admission arrived literally minutes before her nurse was about to wheel her on back-booo to community admissions. So they were hoping she would get to move in this weekend after some folks were discharged. We will see....
Other than that little disappointment for me Blake is doing wonderful. She looked great and seemed so happy today while I was holding her. It was nice to hold her again after a couple of days. It is the worst thing to one day be able to cuddle her and then the next just look at her. It stinks!
Yesterday we did get the good word from a surgical standpoint that in two weeks she can be discharged. Hooray!
So things are starting to look up!

Surgery Day

Today was yet another surgery day, our 4th to be exact. She has had a surgery every single week of her life except for one. Can you imagine?

Jeff & I arrived around noon or a little before and spent time sitting with her, holding her, and loving on her. Jeff held her for a long time which he really enjoyed. Once the anesthesia team arrived around 1:00 we did our usual routine. Go over the past surgeries, answer questions, and then walk down to the 3rd floor where we have to stop and give our hugs and kisses then we head to the waiting room. The surgery actually started around 1:45 or 2:00 and she was out in about a hour. Quick one this time. Dr. Lim met with us afterwards as usual. He let us know he had once again rinsed out the wound then closed it up except for a tiny pin hole area to allow for drainage to get out. He cleaned out the other suture lines and put in more sutures to help pull the skin closer together. It looks much better. Well Jeff always laughs when the nurses and I comment on how great it looks. Since her hiney actually looks so strange. I would post a picture because yes I took one but I'm not going too.

Dr. Lim said she would remain on the antibiotics for another two weeks just in case and that hopefully if all looks well through the weekend her feedings will begin. Hip Hip Hooray for Blake! The nurse said when they do their assessment and she listens to her belly that it is just gurgling. Poor girl. So as long as no infection appears and her healing continues to do well then it will be up to her to break out. He said he would suspect about 2 more weeks and that we could even have her sutures removed in Birmingham. What great news!

Our apartment lease is up on the 1st of October so we know we are staying until then but will hopefully be able to bring her to the apartment at the beginning of that week.

She recovered well from surgery today. By the time she got back up to the pod she was trying to get her intubation tube out so they respiratory therapist went ahead and pulled it out. Girl doesn't like that thing. She had little pain and was snoozing away when we left. She is becoming a pro at these surgeries.

So thank you all for prayers during her surgery today. Please pray that her healing continues and that we get to start making our way back to Alabama. Sweet Home Alabama!

Here we go again

Well here we go again. I feel like I repeat this same statement at least once a week, which actually for the last three weeks I have-ha. So tomorrow Dr. Lim and his team are going to take her back to the operating room for another wound revision. After the last surgery they left a portion of the wound open. They have been cleaning it and changing its dressings at each diaper change while keeping her on strong antibiotics. The open portion of the wound has now retracted (closed) up enough to where the doctor feels like it needs some help. They could allow it to continue to close up on its own but then she will have to remain on a no formula diet. As of today she hasn't eaten in about 2 weeks. So they will go in, wash it out completely, and put in several sutures to help it close up. So hopefully in a couple of days she will be able to start back on formula. They will insert the tube back in through her nose and feed her that way for several days to make sure her stomach tolerates the formula. This shouldn't be a problem since she has done this before. Then the occupational therapist will work on touch sensation around her mouth. She also should be good with this because she loves her pacifier! Then the occupational therapist will work on feeding her with a bottle. She will work up her feeds while continuing to allow her wound to heal. Then cross our fingers will be out of there.
So at 1:00 tomorrow the hope is that this will be Blake's last surgery here in Cincy. As always keep her, the surgeons, and all of the team in your thoughts and prayers. I will update everyone once she is out of surgery.

Still hereI c

Tomorrow the girls will be 5 weeks old which means Blakely has been in the RCNIC for 5 weeks. It seems so much longer than that or maybe shorter I am not sure. We had a good end of the week though so that is exciting.
Blake did not have to have her scheduled surgeries on Thursday and Saturday. The surgeons feel like her wound is looking good, draining less, and overall improving. She is still on antibiotics and will remain on them for at least another 10 days. I was allowed to hold her again which makes my day. I just sit and rock her for hours. Having that privilege taken away at times is torture. She has also been put on the list to be transferred to B pod which is a pod full of private rooms. Her primary day nurse says we should be in within a week or so. I am so excited to be able to take Palmer & AK to see their sister or as AK calls her "baby sis".
My meme has been here since Wednesday to help out while Jeff is in Alabama for several days. I am so glad she is here helping out and the company is nice too. Ashlyn Kay missed her too!
The surgeon popped in yesterday while I was there and said he was milling over what to do about her open wound. He was deciding between closing it with sutures or allowing it to heal and close on its own. I don't want her to go back to surgery but allowing the wound to close by itself will take a fair amount of time, which prolongs our stay yet again. Oh well. He also said that he thought she might be able to start eating again in a couple of days. She is starting to get very fussy being without food.
Overall she is improving well and as long as the infection stays away we are moving on up.
Thank you for always praying for her recovery.

Since there are so many of you who read this blog and pray daily for our family I would like to use this outlet for a prayer request for friends of ours. Our friends in Birmingham had a sweet baby girl Maggie Belcher this week. She had complications during her delivery and is now in the NICU. The doctors feel her organ functions are good but are concerned about her brain function. Please keep her family ( The Belchers) her your prayers and pray for Maggie and her recovery as well. Being a mother of children in the NICU it is a scary place sometimes and you need lifting up as much as possible.

Have a great Sunday!

Hairbows are always a good sign

Yes, the title is correct. Today when I arrived to the RICNIC my angel had in a hair bow and a top on! Whew hew! I knew that things were going good today when she was allowed to show her fashionable side. Dr. Lim said her wound looked "a-okay" and that he felt like he could hold off on surgery plans this week. He would cleanse the wound at the bedside and have her nurses change her dressings. This was music to my ears. She also was extubated last night and was allowed to go directly to room air, no nasal canula like before.
She isn't completely out of the woods due to the fact that she is still stooling into and on her wound, but that is unavoidable. The nurses are cleaning it and changing her dressings with every diaper change. Crossing our fingers this keeps the infection under control.
Today was a good day!

Another surgery down

Thank you everyone for praying for Blakely during her surgery today. It went very well and she did great. We waited most of the day for it to happen, but it finally did. The surgeons only had to open a small part of her incision rather than the whole thing. They cleaned it out with antibiotic wash. The surgeon said it didn't look as bad as it could have. They put a sponge in the open wound and a are using a wound vacuum over that. This seals off the area and the vacuum pulls the nasty stuff out. She will have to have the sponge replaced in two days which means yet again another surgery and then possibly again on Saturday. They are continuing to treat her with aggressive antibiotics.
When I left tonight she was waking up and seemed to be doing well.
We are going to let her rest tonight and visit her again in the morning where hopefully she won't be in any pain. The surgeon said this infection (as long as it clears up) should only prolong our little journey by a week or so. Let's cross our fingers and toes!

The wear and tear

During dinner tonight Blakely's surgeon Dr. Lim gave us a call. He informed us that he felt the need to take her back to surgery tomorrow. I had to hold back my tears. I had a feeling it was coming, but was in a state of denial hoping the new antibiotics would work a miracle. They didn't though. She will be having yet another surgery tomorrow sometime. The surgeons are adding her on so they have no idea what time her surgery will be. From what I understand she will have all of her stitches removed, her wound cleaned out, and they will leave some areas open and then she will have a dressing which need to be changed multiple times a day. He said he might have to take her to surgery several times this week to completely clean it out.
This is obviously not what neither Jeff nor I wanted to hear. After going 6 days without food she will now go no telling how long. This also pushes our "break out of NICU jail" date to later and probably much later. I feel like this is a never ending cycle.
She is so tiny and her body can only handle so much in my opinion. The nurses keep reminding me that these babies are tougher than we realize. I do know that I have a tough one, but her mamma is starting to worry. I also am being a little selfish because I was allowed to finally hold her as much as I wanted and now I can't even think about it. I am thankful she is tumor free and thankful she is alive, but as a human I want more.

Keep her in your thoughts tomorrow. Surgery is always a risk. Jeff & I are growing weary and need strength as well.

Prayer for Blake

If all of you very dedicated prayer warriors would please send up a extra prayer for Blakely we would appreciate it. Her incision sight is looking more and more like it is getting infected. This obviously is causing her some pain (which I don't like :( ) and this would mean she would have to go back to surgery to have the infection cleaned out. Then we would have to start our battle over again.

Thanks everyone!

1 month birthday!

Tomorrow is the girls 1 month birthday! Hooray! They will be 35 weeks old. This is such a great day. So much has changed and it has all changed for the better.
Palmer is doing very well at our temporary home. She is such a wonderful baby. She sleeps and eats and repeats. Never cries and loves to snuggle. I am so happy to have her here rather than being in the NICU anymore.
Blake is doing well after surgery. Last night they extubated her and put her on a nasal canula. Hooray! She has been taken off of her pain medicine and is tolerating it well. She was so happy to be able to move her head around, finally. While we were at the bedside the surgeon came by. He took off her dressing because he said it was a little too moist. He put extra steri strips to support the open incisions. The surgeon said sometimes during this type of surgery when they shave the tumor away from skin it can permanently damage the nerves of the skin and it causes the skin to die. He felt like at this point hers was not in that situation because there were no breaks in color. They are planning on taking her catheter out soon. This is a important step. The hope is that she can urinate on her own. Again, sometimes there is nerve damage and it causes the bladder to not work. So we will cross our fingers. I again have confidence that this will not be the case. They are going to be able to move her to her back today which will allow for some of the fluid to start moving out of her body. The major battle now will be to keep her wound from getting infected. This is very tricky since it is on her behind. This is why she is not going to be allowed to eat for yet another 4-5 days. Hopefully by then the incision will be healed enough to ward off infection. All in all things are looking up and we are making great progress.

My sister & her husband are leaving today to head back to Alabama. We have had a great visit. My parents will go back tomorrow. I am so sad everyone is leaving. I am happy that Ashlyn Kay will be staying this time around. Jeff & I are so happy to have her back. She loves her "baby sista" as she calls her. She laughs at her every time she makes a noise. I can't wait until she can meet Blake too.

We are so thankful for everything right now!

Hooray

Today Miss Blakely had her final tumor resection. Jeff and I got to the hospital around 6:30 a.m. and sat with her until the surgical team got there. Talk about intimidating....16 surgeons, nurses, anesthesiologist, surrounding your 4 pound 4 ounce daughters bedside. I actually got choked up finally realizing what was about to take place. We followed the team down the elevator and then we parted ways. They took her in to the opearting room at 7:45 a.m. We sat in the surgical waiting room until 1:00 p.m. What a long long wait.

Dr. Lim came and met with us after the surgery. First words out of his mounth..."It was a success" the whole tumor was removed! I threw my arms in the air as if I were saying "Touch Down" and squeeled Hooray! A weight had been immediately lifted off of our shoulders. Literally I felt myself relax and smile with true joy for the first time in several weeks. He continued to tell us how he resected it, what all was involved, and what we were to expect when seeing her.

She has a catheter so that she doesn't pee on the dressing, she has another drainage tube coming from her belly where the tumor used to reside to drain out any possible infection that way arise, and she still is intubated and pretty sedated with pain medication. She lost about a ounce of blood and they were replacing it when we were there tonight. She was given a lot of fluid and is super swollen but that will eventually go away.

This afternoon she was pretty sedated and didn't interact with us, but looked painless and calm. Jeff and I left to take a much needed break and when I went back with mother & daddy she was a little more aware and tried to open her eyes, but they are just too swollen. Bless her heart.

She will remain on TPN and no formula for 7-10 more days. That is a long time without food but the doctor does not want to risk infection from her bowels at the incision sight. She will continue to have the catheter and drainage tube for another week as well. They will try and take out the intubation tube in the next 48 hours depending on her pain level.

Dr. Lim feels like she will heal well from the surgery in about 2-3 weeks. While she is healing they will begin feeding her again and the occupational therapy will come in and work with her on oral stimulation and feeding. She does well with a pacifier so she should and hopefully catch on quickly. So our best case scenario for getting back to Birmingham is 4 weeks and worst case is well who knows. We have complete faith and have no reason to believe we are going to have any problems. She has proven to be a trooper and push through.

They are going to eventually move her to one of their "private rooms". They will have a schedule where Palmer and AK can come to visit. They want to co-bed Palmer & Blake so that they can reconnect. They feel like the twin relationship promotes healing.

Thank you all so much for your continued prayers especially today during her surgery. Continue to keep her on your mind for a good and uncomplicated recovery. Our battle is more than half over. We hope to be in Birmingham by October! Praise the Lord for he is good!

Surgery Information

Hi all! Tomorrow Blakely will be having her "hopefully" final tumor resection surgery. I am extremely anxious to have this behind us. Her surgery starts at 7:45 Eastern time tomorrow morning, bright and early. Jeff & I are planning on arriving to the hospital around 6 or 6:30 to spend time with her before the wisk her away from us. The surgeons are anticipating her surgery lasting around 4 hours from start to finish. The said the day will go like this...
The surgeons will arrive at bedside to go over information and meet with the nurses for final evaluation. We will all go down to the floor below the RICNIC where surgery will be. Jeff & I will wait in the surgical waiting room. We are hoping they will update us half way through, but we are not sure. Once she is done they will take her back up to the ICU and she will get all settled in then they will call for us. I am planning on spending the night there, no way I'm leaving my girl.
The surgeons are hoping for a straight forward surgery with little to no complications.
She is doing good considering she hasn't eaten in 48 hours and has about another 10 days of no eating. Can you imagine? She also has developed a little pink eye and hates her eye drops. I would too though.

Please pray for her tomorrow morning. We have made it so far to have something happen now!