When will I learn? Don’t get your hopes up in the NICU really means, don’t get your hopes up in the NICU. Ever. Even when the doctors tell you it’s ok, don’t do it. This journey has truly become an odyssey – I can only hope it won’t take 10 years to get home. (See what I did there sweetie? Just trying to make my English teacher hubby proud)
After an amazing few days post-surgery, David had another setback last week. His tummy became distended again and the doctors feared he was on the verge of sepsis. Fortunately, blood work came back negative for infection, but as a precaution, the tube was reinserted to remove formula and bile from his stomach and an IV in his head provided his nutrition. The whole scene felt a little too familiar for this scared mama and I couldn’t control my weeping as I barely held myself up over his crib. David was finally diagnosed with ileus which essentially just means there is too much gas in the intestines and it’s blocking nutrition from moving through. If undiagnosed, it can lead to sepsis so thankfully the doctors were on top of it this time. We had just begun to hope that he would be coming home last Friday and even brought in our car seat for the hour long ‘test’ they require of NICU babies. (I’m beginning to feel as though inanimate objects are mocking me. When I asked Jason to get D’s stroller ready, he went septic and the day I brought his car seat into the hospital, he developed ileus.)
After 4 days of no feeds, the doctors have determined David is ready to try feeding again. They have ordered a hypoallergenic formula and are increasing his feeds in very minimal doses. We know he won’t be home this weekend, but we’re hoping to have him home by Halloween (how’s that for a general window of time?) Jason and I decided that we can’t continue to get anyone else’s hopes up only to be dashed like ours have been. We are going to keep all discharge orders to ourselves and when we have actually arrived home safe and sound we will send out a mass text/e-mail announcing David’s arrival! So, stayed tuned to the blog for a surprise post one day!
I’m sitting sideways in a recliner. I have my work clothes on & high heels. I have 2 pillows stuffed behind me to try & keep myself upright. I’m starving & I’ve had 4 cups of coffee today so my bladder is ready to burst. But I’m not moving a muscle. Because this exact position is what finally got my son to sleep. After another round of x-rays & blood work, plus a new IV in his head & tube down his throat, he’s finally sleeping. I’m not budging.
I sit with mothers everyday & ask them to take time for themselves, to “secure their own oxygen mask first” so they can help others better. But I get it. I’m a mother & today, like many other days, my kids come first. I can’t heal his belly or eat for him, I can’t wear the tubes or wires, although I’d happily take his place. But I can hold him & let him sleep. I can twist around to make sure he’s at the perfect angle. I’ll stuff another pillow under my legs & pray some of my strength gets passed to him. His fight is my fight & today we’re winning.
Once I moved passed the initial shock and grief of our prenatal Down syndrome diagnosis, I was able to see things differently. I was completely inspired by Kelle Hampton (www.kellehampton.com) and decided I was going to ‘rock’ Down syndrome too! I had a lot of pretty negative stereotypes about mother’s whose children were diagnosed with Down syndrome and I decided I didn’t want to perpetuate that myth. I may not change the world, but I’ll change my son’s world and I’ll change my world. One of my first chances to be the person I’ve been trying to be came this last Sunday at the Step Up for Down syndrome walk.
Since this was our first walk, I had no idea what to expect. I started simple, just asking a few friends to walk with us, picking a team name (David’s Giants) and choosing a color theme (Red). I planned to make a few signs and maybe bring some water bottles for everyone. As the day drew closer and to compensate for the fact that David would not be joining us, I amped up the planning. A couple of signs turned into a banner, bunting, tissue paper balls, balloons, coffee filter flowers, a custom shirt for Ella and noise makers for the team. At one point I thought, “I hope I’m not going overboard.” Oh, how silly I was! On walk day I had wonderful friends come and help me set up. We brought our wagon, chairs, table and borrowed a friends tent. As we followed the crowd to the park (yes, the crowd) I began to understand how silly I was to think my smattering of flair was overboard at all. We set up under a big tree and right next to 2 other teams with literal spreads. They had tents, tableS – plural, food, noisemakers, custom made banners, uniformed team t-shirts, the works! And they weren’t the only ones; there were 157 teams registered and over 3000 walkers. It was amazing! There were tents, wagons, strollers, dogs and people everywhere! The energy was contagious and as our team began to arrive, I couldn’t stop smiling! Team David’s Giants was well represented with over 30 members – just missing the guest of honor. We had an amazing time and as we left Jason and his friends were already talking about how to make it bigger and better next year. Jason has big plans for our sign, t-shirts and BBQ spread – he’s already assigning different foods to specific friends. And the best part, David will be there!
It was wonderful to be surrounded by our new community. We felt welcomed and like we had been inducted into a special club (Remember when I said I didn’t want to be part of this club? I’m starting to change my mind :)). I couldn’t have asked for a better first SUDS (Step Up for Down Syndrome) walk!
We had an amazing, amazing time at the Step Up for Down Syndrome (SUDS) walk yesterday! I have a ton I want to say about it, but I’ll save it for another post. Today, I want to finish writing about David’s surgery and progress and give that the respect it deserves.
Friday was such an interesting and surreal day. As I mentioned in the first post, I was mentally prepared but those crazy emotions always seem to sneak up on me (I didn’t get voted “class crier” in high school for being unemotional) We were told the surgeon had reserved 3 hours for the surgery and when we were still waiting at 3 1/2 hours, I immediately assumed the worst. Hirschsprung’s can potentially effect the entire large intestine and the more they have to remove, the longer the recovery and the greater the chances for long term issues. As soon as the doctor told us the good news, Jason and I both let go of the adrenaline and nerves that had been keeping us going all day. We were both immediately exhausted and I felt like I couldn’t keep my eyes open another second. Once he was settled in his room, we headed home to rest.
The whole Oulman family had an awesome weekend! David was moved back to the graduate level NICU, our first ever SUDS walk was awesome (more later) and the Bears continued their winning streak (undefeated!!) We’re taking this all as a good sign for things to come. David is starting to eat again today and once he can eat between 2 & 3 oz per feeding and handle them well, he’ll come home! We finally feel as though we’re in the home stretch.
Dr just came out. Her words, “it went great, exactly what I hoped.” They didn’t have to remove much of the large intestine (in other words, it was a short segment vs long segment which is what we wanted) THANK YOU for the prayers! Now we just wait for healing!!
You know that moment right before you faint? Where your head feels heavy AND light & you’re suddenly very aware of your eyes & ears? That’s how I felt as the Dr was walking us through this morning’s procedure & asking me to sign consent. I have researched, waited & talked about this surgery for weeks, and yet, this morning, I’m feeling scared. David is in surgery as I type & we can only pray that it’s going we’ll.
I feel like I often write about the same thing on this blog. Or, I’ll mention something a couple of times and either not follow up or talk about it incessantly. This may be one of those times.
I’ve mentioned before that one of my first silver linings in our diagnosis was how Ella would be effected. I couldn’t imagine anything but a positive outcome for her in all of this. I imagine her being more compassionate, more caring, more loving, just More all around. (She’s already a lot MORE than I can handle so maybe I should be careful what I wish for :)) These last 2 months have been such a weird time for all of us, Ella included. She knew mommy was having the baby, in fact she came to the hospital to see me while I was in labor (an event she reminds me of while feigning her own ‘labor breathing’ – “Mommy, I came to see you at the hospital and you were doing this, Whoo, ohoo, ohoo!”) She came to meet him the day after he was born and we try and bring her up to see him at least once a week. But, the truth is, he isn’t really real to her yet. It’s as if he was still in my belly. We talk about him and we pray for him, but she goes days without seeing him. How real is this for a 3 year old? I know some of her earliest memories are beginning now at this age and it breaks my heart that she will have any recollection of our numerous NICU visits, or Mommy & Daddy crying, or us seeming distracted as we figure out who’s going to give her a bath while one of us runs up to the hospital to feed David. She has definitely had moments of reverting back to baby mode – asking to be held, snuggling more, crying & whining a lot – all of which I know are normal, but it still makes me sad. And I don’t know how much of it is the transition and how much will stay when we actually bring him home. I’m afraid that these past 2 months have created a fear in us that will manifest itself in obsession when he gets home. What if she feels left out or that he is getting all the attention and she begins to feel resentful?
When we found out that we were having a boy and told Ella, she was not happy. She desperately wanted a sister and was very vocal about it. To compensate, she decided she had a baby in her belly too and the baby was her sister, Rosalinda (Ella named her). She has been very concerned about Rosalinda my entire pregnancy and every time something new was bought or gifted for David, she wanted one for Rosalinda too. My mom, mother-in-law and Jason’s aunt all collaborated for Ella’s birthday and bought her a Rosalinda with everything a new baby needs; car seat, high chair, stroller, crib, diaper bag – all of it! We have kept Rosalinda in ‘hiding’ while David is in the hospital. Ella has told us Rosalinda is still in her belly and our plan is to introduce her to Rosalinda when David comes home in the hopes of easing the transition and allowing her to take care of her own baby while I take care of D. I’ll be sure to post pictures and stories of her and Rosalinda’s first meeting.
In the meantime, we brought Ella up to the hospital yesterday and captured some very sweet moments between sister and brother.
Surgery has (tentatively) been scheduled for the 20th! Stay tuned . . .
I didn’t want to write a new post until we knew more. Today we know more, but not enough.
We know David has Hirschsprung’s disease. We know he will require another surgery. We know that irrigations three times a day (done by trained nurses, not me thank goodness!) are helping him eat more and keep his belly at normal size.
We don’t know how severe the Hirschsprung’s is. Is is a short segment (only partially in his rectum) or long segment (up into his larger intestines)? Will the surgery ‘fix’ it or is this the start of a lifetime of bowel issues? When will the surgery be?
Originally, the surgeon told us she wanted to send him home to gain some weight and come back for the surgery in 6-8 weeks. After talking with the neonatalogists who have been with him since birth, we all decided sooner was better for him and us. I know that if they sent him home I would be constantly checking his temperature and belly for fear he was septic again. It wouldn’t be good for him or me to rush him to the ER every other day. We don’t have a definite day scheduled for the surgery but the word on the NICU floor is sometime between the 20th and 24th of this month. Based on what I’ve researched about HD (Hirschsprung’s disease) the recovery from the surgery is 3-7 days. After healing from surgery, they’ll need time to get him back to full feeds (between 2 and 3 ounces). Allowing for the very longest scenario, I am hoping he’ll be home with us by October 10th.
This is such a far cry from the 3-4 weeks that we originally anticipated him being in the NICU after his first surgery. We have had setbacks and surprises all along the way and there’s no guarantee we’re out of the woods yet. I am cautiously optimistic about the surgery and yet I’ve been reading many stories of HD and the lifetime of difficulty ahead. Granted, I’ve been reading these stories on the most incredibly reliable resource I could find – the Internet. I’ve been told by the doctors and nurses to Stay Off! the web so I’m trying to listen to what they’re telling me and continue to pray that this last hurdle is truly the last. If in one month I get to take home my healthy son this will all be worth it. Right?
A shameless brag photo of our adorable boy: