Tying up the loose ends

As Friday approaches, Sutton has several hoops to jump through in order to break free. For the most part, he has successfully done everything that's been asked of him. 

(1) Car seat test (2 hours in a car seat without any major heart rate or oxygen saturation variations): Passed. 

(2) Circumcision: complete. 

(3) Remain stable after monitoring was removed: so far, so good!

(4) Hearing test: Passed for his left ear,  referred to audiology for his right. We were told that because of how the test works, his noisy breathing could have played a role in needing further testing. We're really not concerned - he passed on one side and startles appropriately.

(5) Results from the genetics profile: NEGATIVE! While we had assumed that would be the case, we are enormously relieved to find out that this was just a luck-of-the-draw sort of condition and not something we need to be concerned about with future children. 

His physicians are finishing up all of the paperwork, scheduling follow up appointments and touching base with our pediatrician. I think Friday is really going to happen!

Home?

I haven't posted in about a week because, well, there was nothing to post. We were watching and waiting per ENT instructions. We were looking for steady weight gain and stable vital signs even when he was irritated. In the past 5 days Sutton has gained about 7 ounces (just shy of half a pound) and his vital signs have remained stable. Breastfeeding has been going well, so daddy gave Sutton his first bottle on Thursday.

He spit up a little, but nothing major. He has been doing well alternating between breastfeeding and bottle feeding, so he got his NGT out on Friday. Look at that beautiful little face!

Before

Big brother wanted to hold him - just making sure this is his nose :)

And what is this thing in his head??

Sutton's PICC line was also removed late Friday evening. It had been placed in preparation for surgery and the other procedures he had done, but since we are watching and waiting it seemed unnecessary and just a portal for possible infection. 

Back to the title of this post - home? Maybe. It's on the table now. Tonight Kedric and I will begin a string of four nights in one of the FPU rooms the floor offers. This is to get us (somewhat) out of the hospital setting and "practice" for being at home. Tonight he will maintain his monitoring just to see how the transition is going. If all continues as it has, all of his monitoring will be removed for our remaining three nights. This is scary and wonderful all at the same time. While I try not to be a monitor watcher because you can usually get better information watching your patient than a computer screen, it is very easy to fall back on them to make yourself feel better. We won't have them at home, so it's time to get real and watch Sutton instead of his monitor. If all goes according to plan, we have a tentative release date for FRIDAY, JULY 26. We may get to go home after a very turbulent and emotionally challenging 32 days. I just hope it's not a mirage, as another family here in the NICU described it, that our hope and excitement isn't all dashed by a dream that disappears as we approach it. 

Please pray for Sutton to maintain his stability and weight gain and that we can bring our whole family home, for good, on Friday.

Small victories

Sunday was a rough day, but yesterday and today have been better. 

Yesterday Sutton and I met with the lactation consultant and she gave us some new positioning to help with latching. Thank goodness for her because now Sutton is nursing like a champ. He even gained 60 grams last night! Kedric and I suspect he's trying to get fat and get home :) He is still getting supplemented with breastmilk through his NGT after nursing despite nursing well. This is because he tolerates it without spitting up and the more he is willing to eat and able to tolerate, the more pounds he will pack on. After a good couple of days of weight gain we will reassess whether the supplemental feeds are still necessary. 

Another small victory from yesterday was that, for the majority of the day, Sutton was quiet. He breathed and sounded much like a normal baby. Today he is more stridulous than yesterday, but overall he is still less coarse sounding than he has been. 

Today he will move into a new room. One of his buddies made parole and that baby happened to be in a room with a door and walls. Since mama is with Sutton 24 hours a day and we are nursing and blocking up the hallway pretty regularly, they put our name on the private room. Yay!

Otherwise, nothing new. Much of our remaining time here will be spent watching and waiting to determine if his hygroma and/or airway will require further intervention. 

I do have more pictures of Sutton on our camera, but I have not had access to a computer to load them. I'll get them up as soon as I have an opportunity. As always, thank you for the continued support and prayers. Maybe this little beef cake will surprise us a get an early release date. One can dream, right?!

Longing for parole

As the sun begins to set on another day here in the NICU, I'm finding it difficult to maintain my optimism. After talking with both ENT and the NICU team, it seems as if discharge plans are more like 3-4 weeks out still. The reason being that his airway is still compromised and they don't want to let him go until they're certain it is no longer compromised. If Kedric and I are honest with ourselves, we don't want to take him home until that's the case. It is such a balance between staying here needlessly and heading home too early only to return because of a complication. I'm beginning to understand the fine line that the patients I work with walk; and appreciate their frustration at staying day after day with us. 

Our first week here, Kedric and I met a very sweet couple who had been here with their premature baby for 16 weeks. Mom jokingly said that it felt like prison here and they were hoping to be paroled soon. It was funny when she said it. But I seem to have lost my sense of humor. Tomorrow will mark 3 weeks here and I'm beginning to long for parole. I imagine this is what claustrophobic people feel like - walls closing in and a general feeling of bleakness. I feel trapped. While I'm grateful that I can now breastfeed, I'm bound within the dreary walls of this hospital for every 3-4 hour feeds. This means no being at home with my family, frustrations of a new baby that sometimes latches and sometimes doesn't, no sleep, and no getting out in the sunshine unless I stay within close proximity to the hospital. I have to ask permission from a stranger to see my baby...and to touch him. This is HARD. 

I am so grateful for Sutton's progress and indebted to the staff here as well as family and friends that have pulled us through the last 3 weeks. But I'm tired. And I just want to go home - with my baby. I don't know if I can make it another 3-4 weeks, but it doesn't look like its my choice as to when we'll get parole. 

Progress

Yesterday morning was rough and I was having somewhat of a pity party for myself. I was struggling with guilt, frustration, anger and a plethora of other emotions that are becoming all too familiar on this roller coaster we've been on...even on the best days sometimes these feelings find a way to creep in. I was cleaning up the house, doing laundry and packing our bags for another return trip - I was worn out and just wanted a nap. Then the hospital called to give me an update. 

The doctor/resident/med student - I'm not even sure anymore, there are so many people following his case - said they had further weaned his oxygen down from 4 lpm to 2 lpm and would let him breastfeed that afternoon. I have been exclusively pumping since Sutton was born, so this was a giant ray of sunshine and just the pick-me-up I needed to put me back in thankful spirits. 

He ended up needing to go back up to 4 lpm later that afternoon, but staff still agreed to let me nurse since he had interest in the pacifier even with the humidified oxygen shooting water up his little nose. He did GREAT! Nursing the second time around is definitely easier; our major issue is keeping a sleepy new baby alert enough to feed. But we'll get there. He was also getting partial feeds through his NGT since our biggest objective right now is weight gain, but he has eaten so well today that they are now letting us nurse on demand! The NGT will remain in place so that he can be fed when I am absent. Once breastfeeding is well established, the NGT will be removed and he can have bottled breast milk. 

Sutton is back up to birthweight and gaining, so we are headed in the right direction. This morning his oxygen was removed completely and his vital signs have remained stable - even during feedings. 

Against my better (superstitious nursing) judgement, I asked about discharge planning. The NICU docs said they have no immediate plans, but we will further discuss this with them and his ENT physicians during morning rounds. Our hope is that, if everything continues as it has been for the past few days, we could be home late next week. 

Cautiously optimistic

Since Monday Sutton has been making slow and steady strides towards coming home with us. What a great way for us to celebrate his 2 weeks here! Tuesday, July 9th was his due date and he spent the day weaning down his CPAP settings. Then yesterday he got rid of the CPAP altogether! Bye bye!!

Sutton is currently getting oxygen at 3 lpm and his vital signs have remained stable with each change. His hoarseness is progressively getting better. He still sounds like a dinosaur with a sore throat when he cries, but is relatively quiet now when he sleeps or is just hanging out. 

He is having a follow up bronch today to ensure the area of exposed cartilage is healing. After that his oxygen will continue to be weaned down and he will resume his feeds. 

This poor kid can't seem to gain weight because at every turn he needs to be NPO (nothing by mouth) for some test or procedure. His feeds were increased yesterday to just shy of 3 ounces every 3 hours and he takes it like a champ. The plan (and my hope) is that he can start breastfeeding in the next few days, once his oxygen is gone. It is possible that breastfeeding could utilize too much energy - in which case he would go to bottle feeding and the breast milk would be fortified to help him gain weight. This is not my ideal, but it's certainly small in comparison to some of the other possibilities we have come up against. 

He has been so much more like a "normal" baby these last few days...what I remember Cohen being like. We are so thrilled that things have continued trending in this direction and we are cautiously optimistic that his health status will continue improving. The next few years will probably have a lot of ups and downs, but we feel so fortunate to have gotten through the past 2 weeks to the place we are at now. 

* We will certainly have some bad habits to break from his stay in the NICU: he loves his makeshift wubbanub, sleeping with his monkey on his head and being held all the time! *

Surgery has been cancelled...

...and we couldn't be more thrilled. Let me catch everyone up on how the weekend went. 

Sutton's bronch on Friday showed a surprisingly patent airway. There was an area of exposed cartilage that was found on the left side of his trachea. This is most likely from the mass pushing from the right and causing the ETT to rub and wear down some of the tissue. Since it was late Friday, the ENT opted to replace his ETT with a smaller size, order some steroids through the night to reduce the airway inflammation, and try to extubate him (again) on Saturday. This was all in an effort to allow the exposed area to heal and hopefully prevent scar tissue (which doesn't expand well and could need surgical intervention down the road) from forming and further complicating his airway issue. 

Kedric and I had a lot of reservations about this because of how poorly the previous extubation had gone, not to mention we have seen the displacement of his trachea on the scans and didn't have high hopes for it working out very well. 

It's Monday now and Sutton remains extubated! He is getting oxygen with pressure support, but we will begin weaning that down as well. 

When Kedric and I arrived this morning, Sutton's ENT physicians, nurse, attending, and resident were all at his bedside. We assumed it was because they had other cases move quickly and would be taking him early for his 12:50 surgery. We looked at the images from his bronch and the ENTs explained that they have seen babies get by with more restrictive airways and they have been extremely surprised by the results of his bronch and thrilled with the success of his extubation. They had discussed several options prior to our arrival and felt that foregoing surgery at this time would be Sutton's best option.  

The logic behind this is that 1) he will have to be reintubated for surgery and for a brief time after and this would cause further irritation to his airway and 2) he is breathing just fine without having surgery. Kedric and I agreed, and surgery for today has been cancelled. They have increased the volume of his feeds and began reducing the pressure support on his oxygen. Ideally, he will keep trending in this direction and we may be able to take surgery of the table indefinitely. What we need now is weight gain. The bigger he grows, the less these cysts will impact his airway (assuming they grow minimally or at least at a slower rate than he does). We may be able to sustain with sclerotherapy.  

This weekend and today have been so promising that its hard not to rest all of our hopes on no surgery, no trach, breastfeeding soon (which is a very real possibility!!), and GOING HOME. But we are trying to remain realistic as things are always changing. So we'll take this one day at a time. We are SO thankful that our baby has been prayed for by so many and watched over by one - we may not have had such wonderful news today if this hadn't been the case. 

We ask for your continued prayers as we move moment by moment. We look forward to being home as soon as possible and now, hopefully, sooner than we had thought. 

Here are some cute closing pics :)

Sutton's bronchoscopy

Sutton's bronchoscopy didn't happen until late this evening, so we just got our update from his nurse. The procedure went well and he is still pretty snoozy from all of the sedation. 

His ETT (the tube that is in his throat to help him breathe) was changed to a different size because it was found to be rubbing and further irritating his airway. He will get some decadron, a steroid, overnight to help decrease some of the inflammation in his airway. There was discussion of possibly extubating him tomorrow, but we expressed concern over doing that because of the trauma of the last extubation (both for Sutton and for us). His nurse will address these issues with the physicians and we will most likely keep him intubated until after surgery. He will have to be intubated during surgery, so it seems silly to extubate him when he will have to be reintubated in 48 hours. 

This does give us more hope, though, that after the debulking maybe he can breathe on his own and we can avoid a trach. Oh boy, how we would like to avoid a trach. 

Cohen's adventures

Poor Cohen has been passed around to various friends and family members all over Missouri and Illinois. And because he's so easygoing, he seems to have loved every minute of it. There is new scenery and new playmates at every stop. 

But the kid still misses home. He even tells us which toys he wants to play with on our rides back. 

Kedric and I just want to give a heartfelt thank you to all of the friends and family that have provided us with support, encouragement, kind words, prayers, food and even child care over the past two weeks or so. There is no way we would still be functional without each and every person that has helped us. Please know that, even if we fail to respond to a message or return a call, your kind sentiments are greatly appreciated and often come just when we need them the most. 

Fire drill

Some if you may not appreciate this as much as others, but one of the most daunting things about having a newborn is the significant lack of sleep. When they wake in the middle of the night to nurse, there is incentive to get out of bed and feed them. However, I have been waking to an alarm every 3 hours around the clock for the past 10 days. Couple that with the surprise nature of our situation and traveling 2 hours away from home to be with Sutton and you have one exhausted mama. Needless to say, it's very hard not to ignore my phone alarm in the middle of the night and go back to sleep. However, I am mass producing milk - about 4 feedings worth at every pumping (that may be TMI for some of you, sorry!) so I allow myself one 4 hour stretch in the middle of the night just to get a little extra sleep. 

Last night, almost exactly on the mark of hour 3 on my 4 hour block, the fire alarm goes off at our hotel!

By the time we got back to our room, I was pretty close to my 4 hour mark so I lost out on a little extra sleep last night. At least I got a little nap in on our way back home this afternoon! ;)

Our newest game plan

After reviewing the various images from Sutton's MRI with his ENT doc, we have a game plan that takes us out about a week or so - our longest yet.

They weren't exaggerating, the masses (as there are several small cysts rather than a few large ones) take up a large area in his neck and upper chest. His trachea is significantly deviated as a result and there is even some tongue displacement because it is pushing up on his jaw. According to his doc, the majority of the cysts are more solid. She says this is not necessarily better or worse than a more fluid filled cyst, but the more solid cysts do not respond very well to sclerotherapy and this is possibly why we did not have great success with it last week. The tricky part is that on the right side of his neck and around his clavicle there are cysts surrounding a bundle of nerves and two major vessels, one that runs down into his arm and the other up into his neck. These are more fluid and, because of the risk, will not be resected (removed). If they become an issue the sclerotherapy may be an appropriate treatment option. Despite all of this, Sutton really likes his pacifier!

He will have a bronchoscopy done late in the afternoon on the 5th to take a look at what happens to his airway when there is no tube holding it open. We do not know how long the cysts have been present (I had my last ultrasound at 28 weeks and it was not seen then, but it could have been difficult to see even if we had been looking for it) and it may have weakened the cartilage in his trachea. This is in preparation for a partial resection where they will remove as much of the mass in the front of his neck and chest as is safe, in the hopes that it will be enough to relieve the pressure on his trachea and jaw and allow things to fall back into the appropriate place. The partial resection is scheduled for Monday afternoon and will take several hours. 

The incision will be on his neck so he will remain intubated until it heals. After it has had some time to heal we will reassess whether a trach is still necessary. Any way you spin it, we are looking at another several weeks to a month here in St. Louis and will spend the next several years following up on an outpatient basis with his physician. 

I asked the ENT to explain what the interventional radiologist meant when he said that the condition would resolve itself by toddlerhood. She said that the condition will not go away, but it can often remain dormant without swelling as long as the individual isn't sick. When he gets sick we may see some swelling in his neck. For those of you that have children, you appreciate what a task the next several years may be in maintaining his health, especially with a 2 year old at home!

Also, yesterday they removed his umbilical line and placed a PICC line on the left side of his head. They had previously shaved some hair off in an attempt to get a peripheral IV in and they ended up having to place the umbilical line but, fortunately, they were able to place the PICC in the area they already shaved so he incurred no further hair loss. :)

Right now, we just want all of the procedures to be as safe and successful as possible. We are really hoping to avoid a trach still, but only time will tell. 

MRI results

We received a call from one of Sutton's physicians early this afternoon with the results of his MRI. Unfortunately, they were not what we were hoping to hear. His hygroma is rather large and involves major vessels. It extends into his chest just below the clavicle and is much more complex than the ENT typically sees. We have not spoken with his ENT as she is discussing surgical possibilities with her colleagues before going over them with us. She will likely have some options for us tomorrow. We do know that she has OR time available on Monday, so any surgery would probably occur then.

The good news? The ultrasounds of Sutton's heart and abdomen that the geneticists wanted came back completely normal. This gives us more hope to lean towards an unknown cause instead of a genetic cause.

Tomorrow morning we will head back to St. Louis to be with Sutton and discuss the options for him.

Meeting with the geneticists

We spent some time talking with the geneticists today. In 60% of cases of cystic hygroma there are chromosomal abnormalities. The most common include Turner's syndrome (found only in females) and trisomies 13, 18 or 21 (of which Sutton displays no traits). 

Based on our family medical history and Sutton's overall health, we're putting all of our eggs in the it-was-just-a-fluke basket. If that is the case, the docs say that it would be unlikely we would see this show up in subsequent children. 

More or less, the genetic counseling is being used to rule out any chromosomal abnormalities. As many of you know, we planned on more children, so this counseling is extremely important to us. If  we are wrong and there is a chromosomal abnormality it will change our plans dramatically. BUT, that's a big 'if' right now. And seeing as I'm only a week postpartum, future family planning isn't an immediate concern. 

The results of these tests will take 2 weeks to a month to come in, so we'll likely put this topic on the shelf until then. 

MRI

Today was the day for Sutton's MRI. We had originally anticipated an early morning MRI, but because his condition is stable he was put on the schedule for early afternoon. Then, as sometimes happens, one of the machines goes down and everything gets backed up. Fortunately, his docs pushed to have it done today when MRI wanted to reschedule for tomorrow. At 4:00 they started preparing him for his travels. They replaced all of his monitoring equipment to be MRI compatible, snuggled him in some sort of papoose to keep him still and assist in moving him around for the procedure, and gathered up respiratory therapy (RT), our nurse, and some other staff to transport him. It was quite the production. 

They gave him 2 hours worth of Fentanyl instead of taking his drip with him and the little booger fought falling asleep quite impressively! He has a bit of a temper and doesn't particularly like when he isn't swaddled, so once he got into his papoose-thingy he was quite happy and comfortable and eventually started to doze off.

It is unlikely that we will have any results or a game plan before tomorrow. After speaking with the attending, ENT, residents and fellows, our hope is that they won't find anything new from the imaging today that wasn't already seen on his ultrasound last week. If that is the case, there is a possibility that they could remove the affected lymph nodes and wait for his swelling to go down and trachea to shift back to midline. That, in fact, is our only issue right now - the deviation in his trachea. His labs are otherwise unremarkable, he is up to his goal feedings without incident and he remains on CPAP (where he does the work initiating his breaths) instead of the ventilator settings. 

Although that is our hope, the ENT made it clear that many times the affected nodes can be wrapped behind the trachea (the ultrasound would not have been able to see this) which would, at the very least, complicate any surgical removal. They have made us aware that there is the possibility of needing to place a trach in order to maintain his airway until the condition resolves itself. When Sutton had sclerotherapy (the drainage of some of the larger nodes) last week, the interventional radiologist noted that he doesn't see this in teens because its typically resolved by the time they reach toddlerhood. All things considered, we are very fortunate that this one thing is what is keeping him in the NICU. 

There are a lot of 'what ifs' swirling right now, but we are just trying to be patient and wait for all the data to come in so we have a clear picture of what lies ahead for Sutton.