Cardiologist Visit/Joel and Seth Summer Fun

Well, this week has just been exhausting, but nothing really new. Brandt and I saw the cardiologist yesterday-he's reached the 9-lb mark. 9lb 1 oz to be exact. So he's still at the very bottom of the weight charts, but at least his gain is consistent. His 02 sats remain mid 80s and good BP readings. All of this indicates we are on track with good progress toward his second surgery...I guess I was hopeful that at some point (in the near future) some of the 8 meds/supplements he's on wouldn't be needed, and the constant attention to his weight gain would relax. At this point it's all still necessary. He's had another rough week with spitting up--and his doctor wants his calorie intake increased if possible. So maybe after surgery #2 mom will get more rest?! Oh, and several of you have asked--I will not be having surgery for right now. My doctor wants to treat everything with medicine right now until after his second surgery as well, due to just everything going on now and the extreme fatigue from more surgery for me right now...probably good advice and I'm hopeful the new medicine will help.

Another good note, I am grateful for family who have helped give Joel and Seth some extra activities during the week. My aunt takes them swimming and other fun outings a couple times a week, and they also get to the library, park, etc with Glenn's family. Glenn's dad has been taking them fishing, and Joel especially has been very diligent in pursuit of a large bass. (Seth gets antsy sitting around waiting for a fish to bite--as do I, incidentally--but has shown a huge aptitude for reading instead.) While Joel still hasn't caught the 5 to 7-lber he's after, he was thrilled to catch this 2 to 3lb large-mouth bass yesterday:-) And Seth LOVED the firetruck and peppered fire personnel with questions at a church activity they attended with my aunt. Lots of happy memories, thanks to such great support, despite the fact it's been difficult to impossible for me to get out with Brandt in the heat.

Shower Pics

Happy Two Month Birthday

Can't believe my sweet boy is two months old today!! He had a great week and has finally started eating like crazy. With a combination of nursing and bottle feeds the spit up issues seem a little better as well. Only down side a lack of sleep since he also has spent several nights eating every two to three hours...but I will happily take this growth spurt any day.

Yesterday was also a really sweet time with dear family and friends who planned a shower for me! They did a great job with decorations to match his room puppy theme, delicious food, and fun fellowship. Brandt did not attend:-)but they had a great display of pictures in his honor, and it was just another reminder of how far he's come so fast-thank you all for a wonderful time.

The Burpinator

Brandt has had a good week -- 6 weeks postsurgery as of Tuesday!! Feeding him continues to present many challenges. About the time we think we've figured out when he will or will not projectile vomit, he completely reverses the pattern. Hence the nickname from Glenn, The Burpinator. After being doused in spit several times, Glenn just started tying a blanket around his neck when he's holding him. Hey, if it works . . .

I continue to marvel at how well he's doing, especially as we follow more heart babies we come in contact with. No matter the challenges he's facing, or my temptation to be frustrated that we have such a long road ahead of us, every bit of seeing a living breathing miracle in front of me as I spend time with him reminds me of God's grace. And I hear this from many of the families going through difficult recovery times, and even with heart-rending tenderness from grieving families whose little ones have gone on to be with the Lord. Last night, Brandt had a horrible episode--probably one of the worst since we've come home--where he threw up through his nose and stopped breathing. We've learned to sit him up quickly and make sure his nose passages clear, but when he turns that awful blue color it scares me so badly. And reminds me that none of us know how long our lives here on earth may last . . . and the importance of how we spend that time . . . and the joy of one day meeting our Savior face to face. I cannot imagine life without this dear little one already, but praise God for a daily reminder of His goodness and greatness, no matter the joys or sorrows of that daily life!

Cardiologist Visit and Echo Results

Wow I am so encouraged today . . . we saw the cardiologist and had an echocardiogram for Brandt and yippee . . . he weighed in at 8lbs 3oz!!! That means he's actually gained 6 oz since Friday. His doctor is also very pleased with the echo results--all functions remain stable with great shunt flow and no additional leakage. Of course, he had to projectile vomit all over his car seat, the exam table, himself and ME to finish off the visit. Glenn says if he weren't doing all this spitting/throwing up he would be HUGE. We do have a concern around his digestion right now--don't think it's a big problem, but I'm in touch with the pediatrician's office about that. A quick side note . . . I am having some health issues that may require further surgery--please pray for wisdom about the timing of all that considering Brandt's high maintenance needs right now!!

Pediatrician Visit

Had a great visit with Brandt's pediatrician today . . . his cardiologist had requested some additional bloodwork and support with all his reflux meds and immunizations. We were thrilled to learn his iron, platelet and hemoglobin levels are all very strong. In addition his O2 sats were at 88, a wonderful level for him! The doctor made a few small changes to the meds to try to help with his projectile vomiting, which still seems to have no rhyme nor reason when it happens. But he feels we're on the right track with straight nursing for the most part (I am still pumping occasionally to help with supply issues--we continue to fortify any bottles with the milk free formula for additional calories) and even gradually introducing dairy back into my diet, as Brandt is currently gaining weight at the 1/2 oz per day that they would like to see. Of course, he's still behind on the weight charts, but again, he's making progress and progress is good. He currently weighs 7lb 13 oz. -- at least we should be able to hit the full one pound gained mark by the time he's 2 months old. Glenn and I found this appointment very encouraging as feeding him feels at times an exhausting process, but patience and perseverence--as with many things in life, seem to be paying off.

6 Weeks Old

Brandt was actually 6 weeks two days ago, but since I've been having internet connection problems since then, it is now Thursday of his 6 week mark. Many people have asked me regarding his next surgery, and the general plan with HLHS babies is for the second procedure, the Glenn Surgery, to be scheduled anywhere from 4 to 6 months of age. However, our cardiologist is closely monitoring his saturation levels, the leakage in the working valve of his heart, and his BP levels to make recommendation as to the specific timing of the surgery. This is another reason we need to see him more weight gain, so that if he has to have surgery earlier than expected, his strength and endurance offer as much support to another open heart surgery as possible.

Due to scheduling problems with our pediatrician and the holiday weekend, it's been over a week now since he's had his stats or weight checked, so I am ready for an update on his status as well as some help regarding all the meds he's on for reflux . . . that next appointment will be tomorrow at 10, followed by his next cardiologist appointment Monday the 12th.

Happy 4th of July!

So last week I almost decided to just give up on the blog . . . it is kind of hanging over my head. But I have a bunch of posts started, and have done well writing down the high points of Brandt's journey. And I REALLY want to make myself record it in some form for him, and for us as a family... therefore, I will keep plugging at it. But I plan to do just really short updates for the time being and gradually finish all the previous posts I have started and never completed!

For today, we are just full of joy and gratitude to be together as a family, celebrating our freedom in a country that allows us the right to worship God, providing a climate for free enterprise that produced the advanced health care that God used to save our little Brandt's life and give us an amazing almost 6 weeks with our little miracle. Happy 4th of July!