A Little Something Extra

Thursday, March 6, 2008

Alone with the boys

It's my first day alone with the boys (my mom left yesterday afternoon for a week) and all is well, except for my bloodshot eyes. Both boys are napping with full tummies and clean bodies. I'm trying to tell myself that's all that really matters as I look at my pigsty of a house.

After I posted last Saturday, the home health nurse came by for her first visit. It lasted a long time (3 hours) because she had to get all of Micah's medical history. She measured his respiratory rate twice and it was in the 80's (should be 40's or 50's). He was also using extra muscles to breathe. She put in some calls to Micah's cardiologist and pediatrician. After she talked with them, she called me and told me to take him to the ER. Great. 24 hours at home, then back to the hospital. After 4 hours in the ER, which included a nasty blood draw and an IV inserted (it's times like those that I miss the NICU), we were told he would be staying the night. I was so sad when I carried him into a room on the pediatric floor. The crib was 3 times larger than his NICU crib and I could barely stand to lay him down in it. Fortunately, Micah's cardiologist was on call so she came to see him around 10pm and increased his medications. Micah was discharged around noon on Sunday.

Hopefully the drama is over. Micah had his 2 month "well visit" with his pediatrician yesterday. It was her first time meeting Micah. I'm very sad that she is going on maternity leave in April for 12 weeks. The appt went well. Her concern is the same as everyone else's: weight gain. She was glad to hear that home health was coming by our house to weigh Micah at least once a week. She'd rather he not spend time in the waiting room at the office if not absolutely necessary. Micah had an appt with his cardiologist yesterday. She increased his meds again and wants to touch base on Tuesday to decide whether she needs to see him again on Wednesday. Regarding his heart surgery, she thinks 3-4 months (he's already 2 months old), but she wants him to be at least 10 pounds, if not 12. I'm guessing his surgery will be in May. Oh, and he finally hit 8 pounds yesterday!

We're very concerned about our little guy. It's stressful to think about him exerting so much effort just to breathe. We've had a pretty stressful few months since receiving all of Micah's diagnoses before he was born. We were looking forward to vacation with Mark's parents in April, but we can't go because Micah can't fly (or be far away from his doctors). We desperately need a vacation, but that will have to wait. We just want Micah to be well.
This shot cracks me up. This is what I found in Micah's crib when we arrived the morning of his g-tube surgery. His overnight nurse had given him a bath and he nuzzled himself into his blankets and all I could see was his fuzzy hair.

[It's taken me all day to write this post.]


Kris said...

Oh, Jennie, I wish there was something I could write that would bring you peace, knowing that there is light at the end of this tunnel called heart failure. I so remember our difficult summer before Erin's heart surgery at six months of age. The meds are so needed, but they cause reactions too. You are in survival mode until after surgegy, and I so remember it. Erin too was hospitalized twice in the months before her heart surgery. We weighed her daily, with a home scale, and just waited and prayed that she would gain and stay healthy. She weighed 10 lbs at the time of her surgery. You will be amazed at Micah's energy after surgery, he will be a different baby. He will grow and smile and laugh. Erin would belly-laugh, out of the blue, for the first time the day we brought her home after open-heart because she finally had the energy to do so, and it was like she was letting us know how good she felt. There will come a day when you will be so very thankful that you made it through all this, and you'll feel a sense of pride that you all landed on your two feet. You will celebrate Micah's first birthday like no other birthday. You will forget that he has Ds. Your heart will transform, right along with his. I promise! God bless you, you are all in our prayers. PS. Sorry this is so long, I've lost your private email!

Beth said...

He is a precious little boy!! You guys are in our thoughts and prayers that Micah continues to gain weight and that when surgery time arrives, that all goes well for Micah!

Christine said...

Ditto to everything Kris said. I could not have put it better myself- especially the part about the first birthday. My daughter just turned two, and on both of her birthdays, I looked at her and felt such admiration and respect for everything she has persevered through.

MommySecrets said...

Micah is the CUTEST little boy! I love his fuzzy hair!! Keep posting pics - I love seeing himn grow.

Ami said...

Sending you big ((((hugs)))) and loads of prayers. I love the pics - he is growing so well, and is such a cute little boy! I love reading your updates, and check in often.

Jonathan said...


I'm so impressed you squeezed in time to post, along with everything else. I'm so encouraged by the other commenters who have come through on the other side of their babies' surgeries and birthdays. I hope you're encouraged, too! We'll look forward to those triumphs and joys along with you. You are in our prayers!

Love from all of us

marcksandrea said...

Hi Jennie-
I wish I had some encouraging words, but I don't. I know you are so tired and exhausted and I pray for you to find peace. I am also thanking God that He gave Micah to you. You are an excellent mother and I am so happy that Micah will have a great life because of everything you are doing for him now. I'm sure it's hard to go day by day like you have been, but hang in there. You are in my prayers......

ATLKrafts said...

Let us know what we as your supporting community can do to encourage you. We will pray that he will gain weight quickly and the medicines can do their job to help him be comfortable (and using the least amount of energy) before the surgery. We love you! You are doing great despite all of these hurdles! I am sure that you will look back in amazement-- certainly you couldn't have imagined all you know about NOW even a few months ago when you learned the diagnosis. And, he is SUCH a darling baby! We can't wait to see the fluffy hair in person!

Anonymous said...

We are thinking of you guys and saying prayers for the entire family. Stay strong.
Danielle, Jim, Helena and Julia