Looking Forward to Some Sunny Days...

Isn't this a pretty picture? Hugh took it last summer at his parent's house in Woodland Hills. Makes me want warm weather here, right now. Also has me looking forward to better days with my sweet little son. Hughie has been stable over the weekend; although, he really isn't getting much better. He received more blood products last night and today, plasma three times and red blood cells once. It is curious where all his on own blood products are going. His red blood cells are partly low because they have to take so much of his blood every day for labs (blood gases, blood counts, cultures, etc.). About two nights ago, Hughie had a PICC (percutaneous intervenous central catheter) placed in his arm so they could remove the line in his umbilical vein (UVC). The PICC works like an IV, but will last much longer and will enable Hughie to receive his heart and blood pressure medications along with his nutrition, until the doctors want to start feeding him (I've been pumping away freezing milk to give to my little guy). The UVC was starting to look red (concern for infection), so it needed to come out. They started him on antibiotics immediately and drew some more blood cultures to look for infection. Sure enough, we found out today the cultures came back positive, which means he has an infection...again. Hopefully we are somewhat on top of it because antibiotics were started immediately upon finding the redness. It is protocol to keep drawing blood cultures every couple of days until they come back negative. So more blood draws for little Hughie. He is still very puffy...poor guy, it looks so uncomfortable. They have started giving him albumin to try to pull some of the fluid back into his vessels and then give him some lasix to help him pee of the extra fluid. So far he hasn't responded great to the lasix. I think it is up to his body to heal and start getting rid of the fluid on his own. I keep praying for this. The good news....they were able to come down on some of his ventilator settings today! He still needs the bili lights (which means he has to wear those dumb goggles), but hopefully his levels will be low enough in the morning to stop the lights. I cherish those rare moments when he has the goggles off and I can look at his sweet little face.

On Saturday, little Hughie received a very special blessing from his father. Hugh gave him such a tender and sweet blessing...blessing his body and all its different systems to have the capacity to perform their role. He also blessed Hughie to know that he is meant to be a part of our family, and we feel blessed to have him. I am grateful for Hugh and the priesthood he worthily holds, so he could bless our sweet son. Those present for the blessing were: grandpa Sterling, grandpa Scott, Bishop Beardall, all his uncles, Mike, Arthur, WIll, and Andrew. You have alot of love and support surrounding you, little Hughie. Afterward Hugh and I each received a blessing from each of our fathers. I know these will help give us guidance as we make decisions for our son. I know we are receiving help from above through all of this...I can feel it everyday. It is often what helps me confront each new day.

It is a new week....I"m looking forward to what may be in store. I am so antsy for Hughie to turn the corner and start getting better. **I am also hoping to feel less sore myself, I've decided it is not very much fun healing from a c-section** We will probably sit down with Dr. Carey, the geneticist, this week and discuss little Hughie and what may be in his forcast. This will be helpful as we continue to care for this special boy. Thanks to everyone for your thoughts, prayers, and support...we can feel all this energy everyday. I'm sure little Hughie can feel it as well. Much love to everyone.

A Little Jealous...

**Last night, after Ruby's fun day with dad, this is how their day together ended...cheek to cheek. Although I was a bit jealous, I couldn't help but smile at the special bond between these two.

Hughie took us on a bit of a roller coaster today. He had a scary episode this afternoon with some not so good labs and a dropping blood pressure. Because Hughie is on the ventilator, they check his blood gases frequently when they make changes. They decreased some of his settings today and after, they checked his gases to make sure he tolerates the changes. His pH had dropped to 6.9 (normal 7.35) and his CO2 was greater than 130 (normal 35-45). His blood was extremely acidic because he was retaining way too much CO2. Along with this horrible blood gas, his blood pressure started dropping. Hughie's nurse was very effective at getting the appropriate people at the bedside immediately, and the interventions began. It was quickly decided to check the placement of his ET tube (breathing tube), which ultimately was the problem. After a couple of attempts they were able to get the tube in the correct position. Hughie's anatomy is different than most babies where his trachea is shorter and his vocal chords are lower, so there is not a lot of room for give for the ET tube placement. At this point his ventilator settings were bumped way up to give him extra support to recover from this episode. He also received another fluid bolus (he had received blood earlier in the am) to help increase his blood pressure--his dopamine was at the maximum of 20. So, my little man will probably get even puffier than he is now. During all this, Hughie had multiple chest x-rays to check his lungs and on one of these new air pockets showed up in his intestines...causing concern for a possible bowel perforation (if this was the case Hughie would go straight to surgery). They have since done a couple follow-up x-rays of his abdomen and so far they have ruled-out the possibility of a bowel perforation...thank goodness!

Although I have been in plenty of stressful situations in my nursing career...it is not the same when it is your own child. I felt so panicked and scared today when all of this started. My heart was racing as I wondered if they were going to be able to stabilize him quick enough. I, along with Hughie's nurse, kept watching his blood pressure drop on the monitor, and it seemed it wasn't going to stop. In the moment, it felt like Hughie might not make it, but I don't think this was ever the case. The whole time the doctors, nurse practitioners, and respiratory therapists, knew they would get Hughie back to a more stable place. I am grateful for their competence in caring for Hughie. I am grateful for prayer...which helped to calm me when my irrational self started taking over. I am grateful for my sweet little Hughie. I am grateful for Hugh...I was much relieved when he arrived to be by my side as we anxiously waited for our son to stabilize. I am grateful for life...which all too often I take for granted. I am grateful that since this episode, Hughie has been stable.

As I said good-bye to Hughie tonight, I mentioned to his nurse how it is hard to leave him and I wish I could just give him a kiss. (I was under the impression kissing him was a huge infection control issue). His cute nurse told me, without hesitation, that giving him a kiss was just fine. So I left my sweet little babe with a goodnight kiss...

A Good Day...

Hughie had a good day today. They turned down some of his ventilator settings and his blood pressure remained stable without having to turn up his dopamine. His upper lobe in the right lung was a little collapsed in the morning, but the lobe opened up some throughout the day. The poor thing is still so puffy...he likes putting both hands on his chest and when he moves them, there are indentations on his chest where his hands were. I am counting down the days until he starts getting rid of all the extra fluid in his tissues. They turned off the bili lights today, so I got to look at his sweet face all day. He even managed to open one of his eyes a little...it is pretty hard with all the edema in his face. I love him...it is hard leaving him at night.

Ruby also had a good day. She loves being with her daddy. On the way home tonight I asked her to say "ma-ma" and she confidently stated "da-da" (she DOES know how to say ma-ma). Hugh was beaming, I on the other hand, was not amused :). They spent all day downtown visiting the Family Search Center, the Salt Lake City Library, and finished the day playing in the rain, stomping in puddles. She was in heaven. Hugh said she was so social with everyone she saw, waving at people 300 ft. away. She was even flirting with a little a 3-year-old boy at the Family Search Center...we may have trouble on our hands :). Ruby is such a special part of our family.

**We came home tonight to a dvd of photos waiting for us. The hospital where Hughie was born sent us pictures they had taken of him. I cried just opening the package. I had to post some because he looks so good....before he got sick**

{Our tiny 3 lb mister in his incubator}

{He looks so pink and un-puffy}

{I love his little hand resting so peacefully on his chest}

{mom holding Hughie's hand}

{Hughie puffy from all the extra fluid}

{Hughie opening his eyes while getting a break from his bili goggles}

{Tiny foot next to dad's finger}

{Sweet little Hughie...}

Mr. Hughie...

Another day has come and gone...I am trying to get some much needed sleep, but I'm anxious for Hugh to get home from the hospital to get a night report on little Hughie. I spent the day with our little guy while Hugh stayed home with Ruby, and I came home and we switched for the evening. It is hard to leave Ruby in the mornings before heading to the hospital, and then it is hard leaving Hughie when heading for home in the evenings. I look forward to all being in the same place.

Today, overall, Hughie remained stable. He came down a little on some of his ventilator settings. He is still edematous which they treated with some lasix (diuretic) today in hopes he would pee off some of the fluid, but we didn't get a great response. His little abdomen has been dusky for the past day, and it was still dusky today. They did an x-ray and his bowels aren't moving right now...most likely because of the sepsis or stress on his body. Until his bowels start working again, they won't even try to feed him. We will keep a watchful eye on his little tummy. I talked to Hugh tonight, and it looks like his blood pressure began trending down tonight along with his hematocrit, so he is receiving another blood transfusion tonight. He seems to really like his transfusions, with his blood pressure and oxygenation improving afterward. I'm praying he will have a good night. He has been moving around a bit more lately, and it seems he is very sensitive to sound. His little eyes are covered most the time because he still needs the bili lights. Today, the nurse let me do some of his cares...change his diaper, clean his eyes, apply eye ointment, and assist in repositioning him. This was the highlight of my week, I finally felt like I could do something for my little man. I love him. I am praying he will have a good night.

Ruby and I cuddled tonight before she fell asleep. I love that little girl. She has been a real trooper...and I know she will be one awesome big sister to Hughie.

**I will post pictures tomorrow...having some technical difficulties uploading my pics

He's Here!

Hugh William Meyer Van Wagenen

3 lbs 7oz. 17 in.

2.17.2010. 4:22 am

{getting a suntan under the bili lights}

{he has the sweetest little hands}

{breathing with the help of the ventilator}

{only the beginning of all the tubes and wires connected to our little man}

I'm not sure if I can even begin to articulate my feelings, thoughts, and emotions right now. But I am going to try. The past two days have been quite the whirlwind. It all began late Tuesday night. We just got home from dinner celebrating my sweet mom's birthday. I was feeling a little sore and uncomfortable as I put my Ruby down for the night. Hugh and I crawled into bed and I started having some painful contractions. At first, I kept telling myself it was probably just indigestion or a strained muscle leftover from my previous night shift at work. I got up twice to settle Ruby, who kept waking up, and each time the pain seemed a little worse. By 11:00 pm I started to become more concerned, but kept telling myself I couldn't be in labor. It was then 1:00 am, and I woke Hugh up and told him we needed to go to the hospital because I was having contractions that were getting more painful and more frequent. I was scared out of my mind and quite emotional. Hugh was my strength {and continues to be} as we rushed to leave. After settling Ruby with my dad, we rushed to IMC thinking they would stop the contractions, put me on bed rest, and give me medication to keep Hughie from coming too early. We were so naive. They did stop the contractions, but when they checked me I was already dilated to a four. Our little man was coming! Hughie was still breech, so a regular delivery was not an option. When the resident said the word c-section, my heart just about stopped--having a c-section is one of my worst fears!! The thought of being awake while being cut open really freaked me out!! But there was no turning back, and within a half hour Dr. Terry was at the hospital ready to bring Hughie safely into the world. As scared as I was, I realized the only choice I had was to be as brave as I could for my little Hughie. Motherhood really has a special power, which enables women to overcome. The c-section was not nearly as bad as I had imagined, and I am truly grateful to be in the hands of such competent and caring doctors and nurses.

After hearing the smallest little cry, Hughie was wisked away to the NICU. Hugh was able to get a few seconds of video footage of Hughie as they passed him through the window from the delivery room to the NICU. It would be a little while before Hugh could go and see our little guy. Hughie was quickly intubated due to his immature lungs, {they were only able to get one shot of steriods in me before he was born, two doses over 48 hours is optimal} and on a ventilator. He has an IV like line in his umbilical vein, a peripheral IV, a feeding tube, and yesterday they started an arterial line to closely monitor his blood pressure. He is receiving all his nutrition from IV fluids and so far hasn't been fed anything through his feeding tube. I have been pumping to have milk ready for him when he's ready. Our little man has a long road ahead...it looks like his heart has some complications, his small chin may cause him some eating and breathing problems, the back of his skull may have fused together prematurely. He also has some interesting facial features...low set ears, funny shaped head, and his neck is short. But he seriously is the sweetest little guy. So pure, innocent, and special. We love him immensely.

Yesterday evening they transported him to Primary Children's Medical Center so he could be closer to different specialists. All my emotions and fears climaxed as I watched the life flight team take my little man. This was really happening, no turning back. I am so scared. But I know my motherly instinct to survive and overcome will kick in. Along with power from above. They will do further genetic testing up there along with consultations with cardiology for his heart and plastic surgery and ENT for his small chin. There were a few scares with him during transport when his blood pressure bottomed out, but he arrived safely and they were able to stabilize him after giving him an emergency blood transfusion. Hugh spent the night up there with him. I won't be discharged until Saturday morning, and then up to Primary's I will go...not sure how long Hughie will be there. Probably a good while.

I just talked to Hugh, and Hughie has a good night up at Primary's. Hugh told Hughie hi from me and that I love him very much, and Hugh said Hughie gave a little wave of his hand. Keep fighting my little man. I already miss having you with me all the time, no more kicks and jabs from within. I wasn't quite ready for you to leave my womb, but I am thrilled to finally meet you and bask in your spirit. I look forward to holding you and showering you with kisses.

It is hard to believe this all happened in two days. It is crazy to think how quickly life can change...and it will never be the same. Although difficult and trying, all for the better. We can't progress and improve unless we are sometimes pushed to our limits. I hope I am up for the challenge.

{Ruby is doing well...enjoying time with grandmas, aunts, and cousins! I'm not sure when she will get to meet her brother. To top off a difficult week, it has been hard being away from my little Roo. I miss her. I just want to pick her up and cuddle her too. I am glad she has so much love surrounding her while I can't be with her.Thanks to everyone. I love you so much Ruby...congratulations on being a big sister!}

"I'm really good at walking...I can walk!"

{on her way}

{to get to her kitchen set}

{to make some yummy food}

{for mom}

Hughie Happenings...


Our little guy is taking our family on quite the adventure. Some days are good and others are a bit more scary. Overall, he is a moving machine and his little jabs continue to reassure me that he is doing okay. I still see the fetal specialist every three weeks to check on his cystic hygroma (extra fluid on the back of his head), underdeveloped chin, dilated kidney's, and overall growth. He is slightly dropping off his growth curve...but hopefully he can catch-up a bit in the next two months. I know I am biased, but he looks pretty darn cute at his ultrasounds. He loves having his hands and feet by his face, and last week he was even grabbing his tiny toes with his hand. I think he is already a little character :). In between my appointments, I put that fact that Hughie might have some problems in a distant corner of my mind. Every three weeks I get a reality check that he still needs to be followed closely, and the future is still a little uncertain. I think the uncertainty is the hardest part, and I have days when I just feel down. We already love our little man so much, I just want to know what he will need from me to make it in this world. Will I be capable and strong enough? I hope so.

I have also been doing a non-stress every week to make sure Hughie is getting all he needs from my placenta. So far so good. My first week I was quite moved by the experience. As I laid on my hospital chair behind a curtain, I not only got to listen to the lull of Hughie's heart, but a handful of other heartbeats coming from other mother's and their babies laying on the same hospital chair, behind the same curtains. I felt so priviledged to be surrounded by so many new lifes! All of Hughie's little buddies, I suppose. Babies are such miracles! I don't want to forget the way I felt that day.

Hang-in there, little Hughie. We look forward to meeting you...but not before April :).

Doesn't some cake sound good right now?

Only if the Ruby comes with it....