Going Home!

We are going home today! We should be leaving early this afternoon. With this move we are thrilled and nervous at the same time. We will provide a better update later with pictures. Thanks for your continued prayers as we transition home.

Room with a VIEW

As quickly as we moved into the NICU step down unit we were moved again to a private room here at Childrens. We are typing this from our new address which is where we will be till we go home with our new baby. They have not indicated how long we will be here and we are hoping it will be a short stay. This is a new day for us as we are now considered the primary care givers (we are here 24/7) and the hospital is just our backup. We are definitely making up for lost time by holding our baby as much as we want and enjoying every minute of it.

Today we had a quick visit from a neuro surgeon who Dr. Barnhart asked to look at Benjamin. He said because of the small cyst that showed up on the Spinal ultrasound last week they are going to do a MRI to rule out any issues. Please pray that it will be clean and there will not be any further issues that would require surgery.

We also pray for energy as Jerry goes back to work and I'll be up a the hospital a lot. Luckily we have family staying with us for the week which will definitely help us balance taking shifts at the hospital.

Visit from big brother Barrett

Today Jerry and I spent all day with Barrett which is a first in more than a week since Benjamin was born. We took turns visiting Benjamin in the NICU step down unit and had a very peaceful day! Barrett was so excited to draw a picture for the baby and deliver it himself. He loved seeing Benjamin and when I was holding him as he came into the cubicle we are in he asked if Benjamin was going to pop back into my tummy! I'm sure he is a little confused because it has been over a week since the LAST time we introduced him to little Benjamin. We did have the chance to get a few pictures of the boys and then Barrett was ready to roam the hospital...so the visit was short and sweet.

Benjamin had another amazing day (I will NEVER get tired of saying that)! When the PIC line (central line) in Benjamin's scalp became clogged Dr. Barnhart decided to discontinue the line and remove it. I thought we might get another IV but to our surprise they just changed his medicine to a liquid that could be taken in his bottle. So now 7-days after major surgery Benjamin has no IVs and is only taking one medicine for his possible reflux (which we aren't really sure he has yet)! We also got to try nursing this morning at the 11:00 a.m. feeding and he did so well...I then nursed again at 1:00 and then this evening at 7:00...each time he did great. We are so thankful that he is feeding well from the bottle and nursing and at his weigh in tonight during bath time his weight was very good and he had not lost any weight since yesterday which is great. We have had friends ask when we think we might be out of the hospital and for right now all we know is that it will take 5 days for the chest tube site to heal and that would need to be watched and cleared before we leave. They also want him to be eating a certain amount before he can go home. We will also probably room in with him in a private room at Children's before they let us go home so we can get ready for the transition to having him on our own.

We had a chance to ask the doctor about the possible cyst on Benjamin's spine last night and he said on the scan it was so small that they would want to re-ultrasound the area but that he was not concerned at all and more importantly Benjamin doesn't have a tethered spine (tied down by nerves) which is common with the TEF group of anomalies. This would be something that could be corrected later but luckily that is not something we will be dealing with.

We enjoyed every minute of holding Benjamin today and are so hopeful that we will be bringing him home soon! Thank you all for your prayers and encouragement and please keep praying that his body will continue to heal and would be free of any infections, ect. and that he would keep eating and growing!

Great news

Today was another amazing day of good news. Benjamin passed his Esophogram and his VCUG (urinary tract test) with flying colors. Within a few hours of the tests they removed his OG tube and he began feeding him breast milk from a bottle. They have been feeding him every 3 hours all day and he LOVED feeding down his newly constructed Esophagus!

When we returned to the NICU after shift change we found Benjamin's little space empty and we found out we had graduated to the NICU step down unit! When I say it is like going from a war zone to the Ritz I'm NOT exaggerating. The nurses even call it the Oasis! It is so calm and quiet and the bed space is huge compared to the little area we have been living in all week. You even have a curtain to pull so that you can have some alone time with your baby and are able to nurse right within the bed space. We had a great nurse our first evening in 3Northwest (which is what they call the step-down unit). Michael showed us how to feed Benjamin for the first time and burp him, all things that are a little intimidating this time around.

We then had a visit from Dr. Barnhart, our surgeon, and he removed Benjamin's chest tube!!! So now we are free to dress him and swaddle him and more importantly HOLD him! Unbelievable day! A week exactly from major surgery and we are sitting holding our baby who is stable and thriving. Tomorrow after a little rest from all of today's adventures we should be able to nurse for the first time. We have lots of pics on today's update...simply because we could not edit them and wanted to share them all with you.

We are so thankful for this amazing little boy and how determined he is to get better. Please continue to pray that his body will heal completely and that his feedings will go well. We have no idea what our time frame looks like as far as getting out of the hospital but now that we are in a calmer environment we feel like we all will be able to rest better (especially Benjamin).

Tomorrow we hope to bring big brother Barrett to see Benjamin!

What a week!

Benjamin is a week old today and you could have never prepared us for the roller coaster this first week would be. We are so thankful that today he seemed very comfortable and went another full day without pain meds. That is just amazing to us when we look at his chest tube and the incision from the TEF repair. His BR levels also came back down to a normal level so they turned off the Bili light. It was so wonderful to get to take off those huge glasses and get to see his face and eyes all day long. He really woke up this evening around 8:30 and was bright eyed and looking around for the rest of our visit. He even searched for his daddy when Jerry made little bird chirping noises over his head.

Tomorrow brings very important tests on his Esophagus and Urine flow. The Esophogram will show us the condition of his new little esophagus and the Urine flow test is a reflex test so it shows if the urine is going in the right direction and not backing up into the kidneys which could cause infection. Since his momma left his diaper off a little too long and Benjamin urinated all over himself tonight we have high hopes that everything is working the way it should.

Please pray that he would continue to be comfortable and that he would heal completely and that no infection, ect would slow down the healing process. We also pray that the tests tomorrow show a functioning esophogus and urinary tract and that we can soon move to the step down nursery on the 3rd floor of Children's.

Benjamin's day

We wanted to share a note that was left taped to Benjamin's bed today by one of our dear medical friends, Alyssa P., from church. She shared that one of her favorite verses is about the tribe of Benjamin...

Deut. 33:12 About Benjamin he said, "let the beloved of the Lord rest secure in him, for he shields him all day long, and the one the Lord loves rests between his shoulders."

Today Benjamin did so well and a prayer was answered when he had not one but five "big poopy..." diapers as his brother Barrett would say. This seems like such a small thing but it is allowing them to up his feedings of breastmilk down his OG tube from 1cc an hour (which is where he started on Monday evening) to 15cc an hour. We believe that is about the same amount of liquid as a can of coke a day (correct us if we are wrong all our medical friends in a comment...we are trying to calculate on little sleep and very little metric knowledge). This should help his BR level which will hopefully mean no more sunbathing under the blue light. It is amazing how happy he is when they let him have the glasses off for a little 15 minute break (which they will do twice a day)...he just opens his big eyes and is so entertained looking at all the lights. He is so aware and jumps every time he hears the lab result canisters being shot into the bin that is close to his bedside. Needless to say he will hopefully be able to sleep through anything after this (or we are going to have to make a recording of all the bells and sounds of the NICU to be his sound machine in the nursery).

Benjamin also had a day with a little less pain than yesterday (or so it seems). He slept comfortably most of the day with just occasional outbursts of crying and when we left him tonight at 10:00 he had not had any morphine all day. We definitely aren't against him having pain meds if he needs them but are thankful that he seems comfortable today without them. I can't imagine how much happier he will be to have the chest tube out (which you see in the pic today laying at his lower right side) as well as the OG tube down his mouth. He often moves the OG tube around with his tongue and makes a really sad/mad face when it gets in his way. He also swats at it pretty regularly (so again...please pray that the little guy doesn't pull it out...)

We were told today that they have schedule both a Esophogram (a test to check the flow of liquid through his esophogus by running a contrasting dye down into the stomach...looking for any possible leaks) as well as a VCUG test (which is the same contrasting dye test but tracks urine flow through the body). Please pray that both of these will have good results and that the doctors will have wisdom as to how to proceed with his feedings, ect. We also pray that his kidneys, ect are functioning normally.

Today we tried to carve out more time with Barrett because we both just needed to be near him. We stayed home for the beginning of the evening visiting hours at the NICU and Jerry and B took a wagon ride to Avondale park to throw rocks into the pond...which B loves (and so does his daddy). We then ate dinner together and played before we left him in the good hands of a friend as we headed off back to the hospital.

Today Jerry and I both hit a bit of a wall. We realized we have been going on adrenaline and now we are settling in to the fact that every day is a waiting game. There are lots of tests and then you have to wait for what seems like forever to hear what the test are showing the doctors. You will see a pic of Benjamin getting an xray right at his bedside...now we just wait to hear what it shows...not easy for an impatient mamma. We did get to speak to Benjamin's surgeon last evening and he said that he felt like Benjamin was doing really well and that feeding from his OG tube was a really great step. They will be doing the dye test on Friday which will indicate if there are any leaks in the esophagus. When I ask his doctor about some tests he had this week (an ultrasound of his spine and rectum) he said they saw a small cyst on his spine. Of coarse to a non-medical person who is terrified by the thought of a new issue we were concerned to hear about this. His doctor just said they would have to review the ultrasound images with a neurologist and they definitely wouldn't address this till he was older. After talking to some medical friends it sounds like a cyst (which is a sac of fluid) could resolve itself on its own (which is our prayer) or in the worst situation would have to be dealt with by removing it, ect (which seems to be something that is treatable and successful in most situations).

Please pray that Jerry and I would be able to stay healthy and rest so that we are able to take care of Barrett and visit with Benjamin (I'm feeling a little under the weather and heading to the doctor now to be extra careful before visiting the baby...pray that it is nothing that would prevent me from seeing him). Please also pray for Benjamin's continued healing and that his esophagus would be ready to take food on Friday (this would mean his chest tube and OG tube could be removed...so we would be able to hold him and he would be so much more comfortable)! Pray that as he is taking breastmilk down the OG tube he would digest it and would soon have a BM (he still hasn't which the doctors said is normal because of all the pain meds and the surgery...but it needs to happen sooner rather than later).

You will also see pics of Barrett showing off his baby brother at mother's day out yesterday. B is having a hard time because we are popping in and out so much. Please pray for him and that we would have good quality time with him.

I asked one of the nurses when it would get easier to leave the baby at the end of visitation...she said when we get to know them and realize how much they care and want to take care of Benjamin. Please pray for us to have peace and to trust the care God has given him at the NICU.